1-2-3 project: a quality improvement initiative to …...1-2-3 project: a quality improvement...

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Memorial Sloan Kettering Cancer Center, New York, NY Corresponding author: Anjali V. Desai, MD, Memorial Sloan Kettering Cancer Center, 1275 York Avenue, New York, NY 10065; e-mail address: Desaia2@ mskcc.org. Disclosures provided by the authors are available with this article at jop.ascopubs.org. DOI: https://doi.org/10.1200/JOP. 18.00346 1-2-3 Project: A Quality Improvement Initiative to Normalize and Systematize Palliative Care for All Patients With Cancer in the Outpatient Clinic Setting Anjali V. Desai, Virginia M. Klimek, Kimberly Chow, Andrew S. Epstein, Camila Bernal, Kelly Anderson, Molly Okpako, Robin Rawlins-Duell, Dana Kramer, Danielle Romano, Jessica I. Goldberg, and Judith E. Nelson QUESTION ASKED: Is it feasible to nor- malize and systematize palliative care from diagnosis for patients at any stage of cancer through integration of primary (ie, non- specialist) and specialist palliative care in a cancer centers high-volume outpatient clinics? SUMMARY ANSWER: Pilot experience sug- gests that a structured and scheduled approach for palliative care assessment and clinical re- sponse in oncology clinics is feasible from the time of cancer diagnosis, regardless of stage or prognosis. This project identified important and actionable palliative care needs, relying pri- marily on oncology teams to respond to these needs, while enhancing access to palliative care specialist input. WHAT WE DID: We developed a quality im- provement initiative introducing palliative care to all newly diagnosed patients with cancer as a collaborative effort between oncology teams and palliative care specialists and piloted the project in two medical oncology clinics (for patients with myelodysplastic syndrome and GI cancer, re- spectively) to establish feasibility. WHAT WE FOUND: All eligible patients en- rolled and continued participation over time without disruption of clinic workflow or decreases in visit volume. Brief, visit-based as- sessments identified important, actionable palliative care needs (Fig), and oncology teams embraced their primary palliative care role with coaching from the palliative care specialists. BIAS, CONFOUNDING FACTOR(S): Our pilot was limited to 58 patients in two oncology clinics in a single dedicated cancer center. Although we have shown feasibility in this sample, which included patients with hematologic or solid tu- mor malignancies, generalizability and scalability will require additional study. A comparative study design involving a larger sample across a more diverse group of sites is also needed for rigorous evaluation of the impact of the in- tervention on outcomes of importance to pa- tients, families, clinicians, and institutions. REAL-LIFE IMPLICATIONS: Although strong evidence supports early integration of palliative care within oncologic care, previous literature has focused on patients with advanced cancer receiving specialist palliative care. The National Comprehensive Cancer Networks guidelines call for palliative care from the beginning for all patients with cancer and for institutional de- velopment of processes for this purpose. In this article, we demonstrate the feasibility of our innovative, visit-based outpatient clinic initiative for newly diagnosed patients at any stage, em- phasizing primary palliative care by oncology teams, with enhanced access to palliative care specialists. This program can serve as a model for other centers by expanding the optimal scope of palliative care within oncology and improving the quality of care that our patients with cancer receive throughout their illness trajectory. Visit 1 Visit 2 Visit 3 Visit 4 Visit 5+ Symptoms Information/decision preferences Illness/treatment understanding Patient values Caregiver assessment Fig. Visit-based, systematic, self-reported assessments in the 1-2-3 project. ReCAPs (Research Contributions Abbreviated for Print) provide a structured, one-page summary of each paper highlighting the main ndings and signicance of the work. The full version of the article is available online at jop.ascopubs.org. Copyright © 2018 by American Society of Clinical Oncology Volume 14 / Issue 12 / December 2018 n jop.ascopubs.org 767 Special Series: Real-World Approaches to Quality Improvement in Oncology ORIGINAL CONTRIBUTION Special Series: Real-World Approaches to Quality Improvement in Oncology ORIGINAL CONTRIBUTION Downloaded from ascopubs.org by Memorial Sloan Kettering Cancer Center on December 12, 2018 from 140.163.254.157 Copyright © 2018 American Society of Clinical Oncology. All rights reserved.

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Page 1: 1-2-3 Project: A Quality Improvement Initiative to …...1-2-3 Project: A Quality Improvement Initiative to Normalize and Systematize Palliative Care for All Patients With Cancer in

Memorial Sloan Kettering Cancer Center,New York, NY

Corresponding author: Anjali V. Desai, MD,Memorial Sloan Kettering Cancer Center,1275 York Avenue, New York, NY 10065;e-mail address: [email protected].

Disclosures provided by the authors areavailable with this article atjop.ascopubs.org.

DOI: https://doi.org/10.1200/JOP.18.00346

1-2-3 Project: A Quality Improvement Initiative toNormalize and Systematize Palliative Care for AllPatients With Cancer in the Outpatient Clinic SettingAnjali V. Desai, Virginia M. Klimek, Kimberly Chow, Andrew S. Epstein, Camila Bernal, Kelly Anderson, Molly Okpako,Robin Rawlins-Duell, Dana Kramer, Danielle Romano, Jessica I. Goldberg, and Judith E. Nelson

QUESTION ASKED: Is it feasible to nor-malize and systematize palliative care fromdiagnosis for patients at any stage of cancerthrough integration of primary (ie, non-specialist) and specialist palliative care in acancer center’s high-volume outpatientclinics?

SUMMARY ANSWER: Pilot experience sug-gests that a structured and scheduled approachfor palliative care assessment and clinical re-sponse in oncology clinics is feasible from thetime of cancer diagnosis, regardless of stage orprognosis. This project identified important andactionable palliative care needs, relying pri-marily on oncology teams to respond to theseneeds, while enhancing access to palliative carespecialist input.

WHAT WE DID: We developed a quality im-provement initiative introducing palliative careto all newly diagnosed patients with cancer as acollaborative effort between oncology teams andpalliative care specialists and piloted the projectin twomedical oncologyclinics (forpatientswithmyelodysplastic syndrome and GI cancer, re-spectively) to establish feasibility.

WHAT WE FOUND: All eligible patients en-rolled and continued participation over timewithout disruption of clinic workflow or

decreases in visit volume. Brief, visit-based as-sessments identified important, actionablepalliative care needs (Fig), and oncology teamsembraced their primary palliative care role withcoaching from the palliative care specialists.

BIAS,CONFOUNDINGFACTOR(S): Ourpilotwas limited to 58 patients in two oncology clinicsin a single dedicated cancer center. Although wehave shown feasibility in this sample, whichincluded patients with hematologic or solid tu-mormalignancies, generalizability and scalabilitywill require additional study. A comparativestudy design involving a larger sample across amore diverse group of sites is also needed forrigorous evaluation of the impact of the in-tervention on outcomes of importance to pa-tients, families, clinicians, and institutions.

REAL-LIFE IMPLICATIONS: Although strongevidence supports early integration of palliativecare within oncologic care, previous literaturehas focused on patients with advanced cancerreceiving specialist palliative care. The NationalComprehensive Cancer Network’s guidelinescall for palliative care from the beginning for allpatients with cancer and for institutional de-velopment of processes for this purpose. In thisarticle, we demonstrate the feasibility of ourinnovative, visit-based outpatient clinic initiativefor newly diagnosed patients at any stage, em-phasizing primary palliative care by oncologyteams, with enhanced access to palliative carespecialists. This programcan serve as amodel forother centers by expanding the optimal scope ofpalliative care within oncology and improvingthe quality of care that our patients with cancerreceive throughout their illness trajectory.

Visit 1 Visit 2 Visit 3 Visit 4 Visit 5+

Symptoms

Information/decision preferences

Illness/treatment understanding

Patient values

Caregiver assessment

Fig. Visit-based, systematic, self-reported assessments in the 1-2-3 project.

ReCAPs (ResearchContributions Abbreviated forPrint) provide a structured,one-page summary of eachpaper highlighting the mainfindings and significance ofthe work. The full version ofthe article is available online atjop.ascopubs.org.

Copyright © 2018 by American Society of Clinical Oncology Volume 14 / Issue 12 / December 2018 n jop.ascopubs.org 767

Special Series: Real-World Approaches toQuality Improvement in Oncology

ORIGINAL CONTRIBUTIONSpecial Series: Real-World Approaches toQuality Improvement in Oncology

ORIGINAL CONTRIBUTION

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Memorial Sloan Kettering Cancer Center,New York, NY

ASSOCIATED CONTENT

Appendix available online

DOI: https://doi.org/10.1200/JOP.18.00346

1-2-3 Project: A QualityImprovement Initiative toNormalizeand Systematize Palliative Care forAll Patients With Cancer in theOutpatient Clinic SettingAnjali V. Desai, Virginia M. Klimek, Kimberly Chow, Andrew S. Epstein, Camila Bernal,Kelly Anderson, Molly Okpako, Robin Rawlins-Duell, Dana Kramer, Danielle Romano,Jessica I. Goldberg, and Judith E. Nelson

AbstractBackgroundPriorworkto integrateearlypalliativecare inoncologyhas focusedonpatientswithadvanced

cancer and primarily on palliative care consultation. We developed this outpatient clinic

initiative for newly diagnosed patients at any stage, emphasizing primary (nonspecialist)

palliative care by oncology teams, with enhanced access to palliative care specialists.

MethodsWe piloted the project in two medical oncology specialty clinics (for patients with

myelodysplastic syndrome and GI cancer, respectively) to establish feasibility. On a visit-

based schedule, patients systematically reported symptoms, information/decision-making

preferences, and illness understanding. They also participated in discussions of their core

values with their oncology nurse. Oncology teams were first responders to palliative care

needs, whereas specialists were available for clinician support and direct patient

consultation.

ResultsAll 58 eligible patients were enrolled. In both clinics, patient self-reports documented a

heavysymptomburden. Information/decision-makingpreferencesand illnessunderstanding

levels varied across patients. Patients prepared new advance directives. Oncology nurses

documented discussions of core values. Requests for palliative care consultation

decreased over time as oncology teams embraced their primary palliative care role with

coaching from the specialists. Clinic workflow and patient volume were maintained.

ConclusionOur pilot experience suggests that in outpatient oncology clinics, a structured, scheduled,

and systematic approach is feasible to deliver palliative care to newly diagnosed patients

with cancer at any stage and throughout their illness trajectory. This novel approach

identified important, actionable palliative care needs, relying primarily on oncology teams

to respond to these needs, while enhancing access to palliative care specialist input.

Expansion toadditional clinicswill allowevaluationof scalability andgeneralizability, along

with measurement of a broader range of important outcomes.

Copyright © 2018 by American Society of Clinical Oncology Volume 14 / Issue 12 / December 2018 n jop.ascopubs.org e775

Special Series: Real-World Approaches toQuality Improvement in Oncology

ORIGINAL CONTRIBUTION

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INTRODUCTIONEarly integration of palliative care with oncologic care im-provespatients’ symptoms,1-3 quality of life,1-3 satisfactionwithcare,1 and illness understanding,4 and can increase survival.2,5 Italso reduces patients’needs for emergency6 and intensive care,7

while increasing the use of hospice for those at the end of life.8

By promoting treatment that is concordant with the patient’svalues and goals, palliative care also reduces costs.9-11

Accordingly, the National Comprehensive Cancer Net-work’s guidelines incorporate palliative care as an in-dispensable component of comprehensive cancer care,regardless of stage, prognosis, or treatment phase: “All cancerpatients should be screened for palliative care needs at theirinitial visit, at appropriate intervals, and as clinically in-dicated.”12 These guidelines call on institutions to “developprocesses for integrating palliative care into cancer care, bothas part of usual oncology care and for patients with specialtypalliative care needs.”12a

Wedeveloped andpiloted a quality improvement initiativeintroducing palliative care to all newly diagnosed patients withcancer as a collaborative effort between oncology teams and

palliative care specialists. We focused on primary (non-specialist) palliative care13,14 provided by the oncology teams(particularly by nursing professionals) within the outpatientsetting. Our goal was to normalize and systematize palliativecare as part of comprehensive cancer care in our institution,which is recognized as an international leader in oncology.Weconducted our pilot evaluation of feasibility and perceivedimpact in two busy oncology clinics.

METHODS

GenesisDecades before the rapid growth of palliative care programs inthe United States,15,16 Memorial Sloan Kettering CancerCenter (MSK) established the first designated pain service in acancer setting, which evolved into an interprofessional pal-liative care program. In 2015, the institution held a day-longretreat to envision the future of palliative care at MSK. Thisretreat was sponsored by the Physician-in-Chief, attended bymore than 120 clinical and administrative leaders acrossMSK,and joined by American Society of Clinical Oncology lead-ership. Three themes emerged: (1) palliative care should bepart of cancer care for all patients throughout their illness; (2)all clinicians are responsible for this care, which should bedelivered by oncology teams with ready access to palliative

care specialists for patient consultation and clinician support;and (3) clinicians should be supported by well-designed workprocesses, tools, and training. With input from many in-stitutional stakeholders, these themes were woven into astrategic plan, including the initiative reported here, The 1-2-3Project to Advance Palliative Care at MSK.

Pilot ImplementationWe piloted this program in two MSK medical oncologyspecialty clinics (treating patients with myelodysplastic syn-drome [MDS] or GI cancer, respectively), each staffed by anattending oncologist and an oncology registered nurse.Starting in theMDS clinic (September 2016) and expanding tothe GI oncology clinic (May 2017), the palliative care as-sessments shown in Figure 1 were added incrementally afterpretesting them individually. Pilot data collection continuedthrough May 2018.

EligibilityPatientswere screened forparticipation throughweekly reviewof preclinic schedules. Eligibility encompassed all newly di-

agnosedadult ($ 21 years old) patients establishing care in thedesignated clinics. Participants had tohave a diagnosis ofMDSorGI cancermade or confirmed atMSK and return for at leastone follow-up visit after the initial one (but notmore than twovisits before project participation), thereby focusing the efforton new patients planning to continue care at our institution.We included patients’ caregivers (either legally designated asthe surrogate or identified by the patient as a participant inhealth care decision making and/or caregiving). We excludedpatients and caregivers lacking sufficient English proficiencyto participate in assessments and interviews.

Institutional ReviewThe MSK Institutional Review Board approved a waiver ofinformedconsent forpatients, caregivers, andstaff,because theproject was intended as a quality improvement initiative andpresented no more than minimal risk to participants.

Visit-Based, Systematic Assessment of PalliativeCare NeedsAt visit 1 (ie, the first follow-up visit for newly diagnosedpatients), the oncology physician and nurse explained thatpatients would receive palliative care as part of their can-cer care, including attention to symptoms, exchange of in-formation, and support for goal-concordant decision making.

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A nurse practitioner (NP) specializing in palliative care wasintroduced as a resource for the team, patient, and caregivers.Patients responded to brief assessments in key palliative caredomains (Fig 1) using a clinic tablet computer. These re-sponses were immediately available to clinicians and includedin the electronic medical record (EMR).

Patient symptomsUsing a modified version of the Edmonton Symptom As-sessment Scale17,18 at every clinic visit, patients rated 10physical, psychological, and spiritual symptomsusing a 0 to 10numeric rating scale (Appendix Fig A1, online only).

Information and decision-making preferencesAt visit 1, patients were asked to report their preferences for

receivingmedical information.Patientswere also askedwho, ifanyone, they looked to for help with medical decision makingand, if not already done, whether they wanted to designate ahealth care proxy.

Illness and treatment understandingAt visit 2 and quarterly thereafter, patients reported theirunderstandingof the expected course of their illness and intentof their cancer treatment via items drawn from the nationalCancer Care Outcomes Research & Surveillance Consortiumstudy.19

Core valuesThis intervention included a two-part sequence of discussionsof the patient’s core values led by the oncology nurse at visits 3

(part I) and 4 (part II). These discussions were structuredaround questions drawn from prior published research by ourgroup and others20-23 that explored the patient’s sense ofpersonhood and core values, and subsequently offered anopportunity for the patient to express preferences with respectto specific care goals. The nurse’s written summary of theseconversations was discussed with the oncologist and verifiedby the patient, after which a copy was given to the patient andentered into the EMR.

Caregiver assessmentAt visit 4, caregivers rated their own well-being using theAmerican Medical Association’s Caregiver Self-AssessmentQuestionnaire, as posted on the American Cancer Society’sWeb site.24

ResponseTo respond to patients’ and caregivers’ needs, our projectintegrated primary and specialist palliative care through aCare, Coach, Consult model. Primary palliative care was pro-vided by the oncology team (ie, attending physician and nurse),with the nurse as the first responder. An NP specializing inpalliative care was identified as a coach who served multipleoncology teams and could be contacted as needed for advice onsymptom management, communication, or care planning ap-proaches (Appendix, online only). This NP could also be calledon (through a referral requested electronically by the oncologyteam) to provide direct consultative care to patients (Appendix).

The primary palliative care was further supported bytargeted training. Guidance for initial symptom care in the

Visit 1 Visit 2 Visit 3 Visit 4 Visit 5+

Symptoms

Information/decision preferences

Illness/treatment understanding

Patient values

Caregiver assessment

Fig 1. Visit-based, systematic, self-reported assessments in the 1-2-3 Project. This figure shows the visit-based protocol for assessment of key palliativecare needs. These assessments are scheduled for specific clinic visits beginningwith the first (Visit 1) after confirmation of the cancer diagnosis. Understandingof the illnessanddiscussionsof patients’valuesare re-addressedonaquarterly basis andwith important changes inpatients’ clinical status (eg, anunscheduledhospitalization or progression of disease through treatment).

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MSK ambulatory setting was manualized for the nurses’reference and periodically updated. In addition, nurses weregivenhelpful language andalgorithmic approaches in the formof ready responses and action pathways for selected situations,for example, when a patient expressed severe emotionaldistress (Appendix Fig A2, online only). Ready responsesencompassed a range of behavioral, integrative, and phar-macologic strategies. Suggestions for referral to inter-disciplinary colleagues in social work, psychiatry, andchaplaincy were incorporated into action pathways (Ap-pendix Fig A2).

EvaluationPilot evaluation focused on feasibility asmeasured by patients’continuation on the protocol, time for patient completion andclinician review of the assessments, completeness of assess-ments, impact on clinic volume, and involvement of palliativecare specialists. We summarized responses to assessmentsusing measures of central tendency and determined thefrequency of health care proxy designation.

RESULTSOf 346 patients visiting for the first time during the period ofpilot observation in the designated clinics, 58 met criteria forparticipation, and all were enrolled in our project. As shown inFigure 2, the most common reasons for patient exclusion

included having a single visit only (eg, for a second opinion),without establishing ongoing care (n = 163); having a di-agnosis other than MDS or GI cancer (n = 107); or lackingEnglish proficiency (n = 17). Table 1 lists baseline charac-teristics of patients and their participation in the program.

For the patient-reported assessments, the median timerequired for patient completion and clinician review was5 minutes or less. Discussions of patients’ values took ap-proximately 15 minutes each. Caregivers completed assess-ments in less than 10minutes. Neither the average duration ofoncology clinic visits nor the average number of visits perclinic (approximately 20 per day in the MDS and GI oncologyclinics, respectively) changed after introduction of our project.No patient refused to complete an assessment, nor did anydecline to discuss their values.

We collected 413 symptom assessments during the pilotperiod (Appendix Fig A1). Symptoms most commonly re-ported at the moderate or severe level were fatigue (49.8%),worry about the future (48.4%), trouble sleeping (40.9%), andoverall distress (40.0%). Patients in the MDS clinic and GIoncology clinic had similar symptom profiles.

Patients’ preferences for information varied. Although77.4% of patients stated they would prefer detailed in-formation, 22.6% preferred only a broad overview. Of patientswho had not appointed a health care proxy before (35 of 58),77.1% did so during project participation.

Fewer than half of patients (39.3%) thought that theirdisease-directed treatmentwas somewhator very likely to curetheir cancer. However, most (75.4%) believed that thistreatmentwas at least somewhat likely tohelp them live longer.

A total of 58 values discussions (part I, 32; part II, 26) werecompleted.Qualitative analysis of these discussions is ongoingand will be the subject of a future report.

We collected self-assessments from 32 caregivers of 30patients.Of these,68.8%(22of32)metcriteria forhighdistress.Caregivers reporting high distress were offered referrals to theclinic’s social worker for initial evaluation, with follow-up asneeded through the Department of Social Work.

Consultationbyapalliative careNPwas formally requestedfor 15.5% of patients (9 of 58). Most of these referrals weremade during the early months of the pilot, as were morefrequent requests for coaching (which were harder to quantifybecause they occurred intermittently throughout the clinicday).

Oncology teams participating in the pilot embraced theirrole as providers of primary palliative care. As one oncology

Screened for eligibility

(n = 346)

Not Eligible/Excluded

Diagnosis not confirmed at MSK

Initial visit only

Not English proficient

Other

Eligible

(n = 58)

GI cancer(n = 24)

MDS

(n = 34)

and Enrolled

(n = 58)

(n = 288)

(n = 107)

(n = 163)

(n = 17)

(n = 1)

Fig 2. Screening and enrollment. Newly diagnosed patients (regardless ofstage or prognosis) visiting the myelodysplastic syndrome (MDS) and GIoncology clinics under study were screened for eligibility and exclusioncriteria. MSK, Memorial Sloan Kettering Cancer Center.

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Table 1. Characteristics of Patients and Their Participation in the 1-2-3 Program

Characteristic MDS (n = 34) GI Cancer (n = 24) All Patients (N = 58)

Median age (range), years 69.5 (34-88) 70.5 (37-85) 70.0 (34-88)

Male, No. (%) 19 14 33 (57.9)

Race, No. (%) — — —

White 30 17 47 (81.0)Black 1 3 4 (6.9)Asian 1 3 4 (6.9)Other 1 1 2 (3.4)Not reported 1 0 1 (1.7)

Completed visitsMedian No. of visits (range) 7 (1-37) 7 (1-24) 7 (1-37)

% of patients completing, No. of visits1-5 20.7 17.2 37.96-10 17.2 13.8 31.011-15 10.3 8.6 19.016-20 3.4 0.0 3.4$ 21 6.9 1.7 8.6

Completed assessmentsSymptomsMedian No. of assessments (range) 5 (1-25) 6 (0-23) 5 (0-25)% of patients completing assessments0-5 31.0 20.7 51.76-10 12.1 15.5 27.611-15 5.2 3.4 8.616-20 5.2 0.0 5.2$ 21 5.2 1.7 6.9

Median time spent (range), min* 5 (1-35†) 4 (1-10) 5 (1-35†)

Information preferences% of patients completing‡ 96.7 100 98.1Median time spent (range), min* 3 (1-10) 3 (2-9) 3 (1-10)

Illness/treatment understanding% of patients completing§ 91.3 94.4 92.7Median time spent (range), min* 3 (2-20) 2 (1-15) 3 (1-20)

Caregiver self-assessment% caregivers completing║ 94.7 100 96.9

Core values% of patients completing¶First values discussion 100 100 100Both values discussions 66.7 94.1 81.2

Abbreviation: MDS, myelodysplastic syndrome.*The nurse recorded the time spent completing the assessment; these numbers were verified using the digital time stamp of the electronic assessment.†A single patient at the high end of the range was discussing symptoms with the oncology nurse while completing the assessment.‡n = 53 (assessment was phased in after start of project).§n = 41 (assessment was phased in after start of project).║n = 32 caregivers for 30 patients (assessmentwas phased in after start of project and not all patientswere accompanied by caregivers; one caregiver declinedto complete the assessment).¶n = 32 (15 MDS, 17 GI cancer). Values component of protocol (sequence of two discussions) was phased in after start of project. No patient declined toparticipate in values discussions; those not completing the second values discussion either died before (n = 2) or had not yet returned for (n = 4) the visit whenthe discussion was to occur.

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nurse described, “Being part of this program has really ele-vated my nursing practice to its fullest. It has not only pushedmy boundaries, but it has also expanded them and allowedmeto continue to grow. This is really the heart of nursing. I thinkit’s really hit home for the patients that I’m there to advocatefor them.”

DISCUSSIONAlthough strong evidence supports early integration of pal-liative carewithinoncologic care, prior studieshave focusedonpatients with advanced cancer25,26 who were receiving spe-cialist palliative care.1-5 The project aimed to extend thisapproach to all patientswith cancer, recognizing that theymayhave needs for symptommanagement and other support fromthe time of diagnosis, regardless of stage, prognosis, ortreatment phase. We also hypothesized that integrated pal-liative care for all patients with cancer starting at diagnosiswould help patients, families, and clinicians understand thatpalliative care is not synonymous with end-of-life care but,

rather, applicable and valuable along with even the most so-phisticatedcancer-directed treatments.Theproject spotlighted,structured, and supported the role of the oncology team,especially the nurse, in providing high-quality primary pal-liative carewhile enhancing access to palliative care specialists.Pilot implementation and evaluation as described here pro-vide evidence of the feasibility of this novel approach.Our dataalso suggest that systematic assessment for all patients withcancer from diagnosis identifies important and actionablepalliative care needs.

Results of the serial symptom assessments we collected areconsistent with other evidence that symptom burden can besignificant in the early phases of cancer care.27 Previous re-search conducted at MSK showed that in patients with ad-vanced solid tumor malignancies receiving chemotherapy,systematic assessment alone not only identified actionablesymptoms but was also associated with improvement inquality of life, better tolerance with longer duration of che-motherapy, reducedneed for emergencydepartment care, andlonger survival compared with usual care.28,29 Evidencesuggests that inclusion of symptom management algorithmscan extend these benefits and decrease hospitalizations.30 The1-2-3 Project translates this evidence into routine clinicalpractice, standardizing assessment for and structuring re-sponse to physical, psychological, and spiritual distress atevery clinic visit beginning with the first.

Previous literature describes unique barriers to engage-ment of palliative care specialists in the care of patients withhematologic malignancies, which may explain delayed re-ferrals for these patients during disease-directed treatment, aswell as lowerhospiceutilizationat theendof life.31-37However,the 1-2-3 Project was quickly embraced by the oncology staffwithin the MDS clinic, as well as by physicians and nursesspecializing in bonemarrow transplantation towhom some ofthe enrolled MDS patients were referred. We attribute thestrength and breadth of support for the project to severalfactors, including early and continuing engagement of keystakeholders in its development; emphasis on the role of theoncology team and particularly nursing professionals inproviding primary palliative care; introduction of palliativecare as a routine, integral component of cancer care; andattention to system design, work process, and efficient tools.

Rapid growth over the past two decades has increased theavailability of palliative care specialists from 25% to 75% inUShospitals with more than 50 beds.38 However, access to suchspecialists in the outpatient setting remains limited,39-42 and inall care settings, workforce shortages43,44 and other factors

constrain the role of these specialists in meeting the palliativecare needs of patients with serious illness. There is growingrecognition that high-quality palliative care must be deliveredat a primary level by all clinicians caring for patients andfamilies facing cancer. Per the National Comprehensive CancerNetwork, “Palliative care should be initiated by the primaryoncology team and then augmented by collaboration with aninterdisciplinary team of palliative care experts.”12 An on-going study is testing a nurse-led primary palliative care in-tervention in outpatient oncology, but is limited to patientswith advanced solid tumor malignancies and does notstructure collaboration with palliative care specialists.25,26 Bycomparison, the 1-2-3 Project includes patients at all stageswith either hematologic or solid tumor malignancies andimplements a model combining primary and specialist pal-liative care. For centers without on-site specialists, telemed-icine might provide a form of communication betweenoncology teams and palliative care specialists, as well as be-tween specialists and patients.46-47

In our center, the volume of outpatient visits is high andtime is of the essence, requiring optimal efficiency to ensurehigh-quality care while maintaining workflow. Although ourproject introduced new assessments, these were brief, anddigital entry of responses by patients (usually while waiting tosee clinicians) made them immediately available to clinicians,

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with automatic documentation in the EMR. Digital displayscan present information such as symptom reports in thecontext of prior reports by the patient, highlighting trends anddeviations fromtypicalpatterns.28 Clinicians in the pilot foundthat this information enabled them to identify palliative careneeds in a more focused fashion, which facilitated moreefficient care. Visit volume did not change after projectimplementation. Routine, proactive assessment of palliativecare needs can provide timely information with opportunitiesfor response that might avoid the need for urgent care afterdelayed recognition. Clear documentation of these assess-ments in the EMR also allows all members of the health careteam to understand the patient’s needs and respond appro-priately, with continuity across providers and care settings.

Oncology nurses in pilot clinics implemented their projectroles successfully and reported that these roles formalized,normalized, and systematized their work in a new, valuable,and professionally gratifying way. Educational support for theproject focused on preparing nurses to respond to patients’expressions of strong emotions, which not only cause sig-nificant patient distress but also interfere with the ability of

patients to absorb and process information about their illnessand treatment that is important for medical decision making.This training was accomplished in less than 2 hours. On thebasis of our pilot experience, the Department of Nursing isdeveloping aprogramthatwill prepare all nurses to implementand disseminate the 1-2-3 Project throughout MSK oncologyclinics.

Todate, the1-2-3Project has been testedonly in twoclinicsat MSK, which is a single, dedicated cancer center. Althoughdiverse, the sample of patients in these clinics is small, andgeneralizability of our findings to other clinics or other in-stitutions is not yet established. Intervals between assessmentswere determined by the frequency of visits to the clinic, whichvaried.Althoughvisit frequency is likely related to the intensityor pace of the underlying illness, therefore potentially servingas a relevant indicator of the need for assessment, optimaltimingofassessments isnotyetknown,norhaveweestablishedthe ideal level of palliative care specialist staffing to supportprimary palliative care by oncology teams in this combinedmodel. Specialist staffing needs could vary according tomultiple factorsat the levelof thepatient,disease, andclinician.At the timeof thispilot,MSKdidnothaveadesignatedspiritualcare provider for the outpatient clinics, but this care will bemore accessible going forward. Assessment and response topalliative needs outside the clinic through modalities such as

telemedicine were not included in our pilot but may signifi-cantly enhance our approach. We have not tested the appli-cability of our currentmodel to the inpatient setting,where thesymptom, communication, and care planning needs may bedifferent. Finally, a larger patient sample and comparativedesign will be needed to rigorously evaluate the impact onoutcomes of interest at the level of patient, caregiver, clinician,process, and health care utilization.

In summary, the 1-2-3 Project aimed to normalize,operationalize, systematize, and thereby improve palliativecare in the outpatient setting as part of comprehensive cancercare for all patients, regardless of disease, stage, or prognosis,beginning at diagnosis. Using a novel, structured, visit-basedapproach, our project identified important and actionablepalliative care needs. The Care, Coach, Consult model in-tegrated primary and specialist palliative care to meet theseneeds. This program can serve as a model for other centers byexpanding the optimal scope of palliative carewithin oncologyand improving the quality of care that our patients with cancerreceive throughout their illness trajectory.

AcknowledgmentA.S.E. is supported by the Cambia Foundation Sojourns Scholar LeadershipProgram. A.V.D. was the Frances Young Tang Research Fellow in PalliativeMedicine at Memorial Sloan Kettering Cancer Center from 2016 to 2017. Thisproject is supported in part by the Charles Hallac Fund for Palliative Care inOncology at Memorial Sloan Kettering Cancer Center. This research was fundedin part through the NCI MSK Cancer Center Support Grant/Core Grant P30CA008748. Presented in abstract form at the Palliative and Supportive Care inOncology Symposium, San Diego, CA, October 27-28, 2017, the AmericanAcademy of Hospice and Palliative Medicine Annual Assembly, Boston, MA,March 14-17, 2018, and The 1st Czech Congress of Hematology andTransfusion Medicine, Prague, Czech Republic, September 16-19, 2018.

Authors’ Disclosures of Potential Conflicts of InterestDisclosures provided by the authors are available with this article atjop.ascopubs.org.

Author ContributionsConceptionanddesign:Anjali V.Desai,VirginiaM.Klimek,KimberlyChow,Andrew S. Epstein, Dana Kramer, Judith E. NelsonFinancial support: Andrew S. Epstein, Judith E. NelsonAdministrative support: Judith E. NelsonProvision of study materials or patients: Andrew S. Epstein, RobinRawlins-Duell, Judith E. NelsonCollectionandassemblyofdata:Anjali V.Desai, VirginiaM.Klimek,KimberlyChow, Andrew S. Epstein, Camila Bernal, Kelley Anderson, Molly Okpako,Robin Rawlins-Duell, Dana Kramer, Danielle Romano, Judith E. NelsonData analysis and interpretation: Anjali V. Desai, Virginia M. Klimek,Andrew S. Epstein, Camila Bernal, Jessica I. Goldberg, Judith E. NelsonManuscript writing: All authorsFinal approval of manuscript: All authorsAccountable for all aspects of the work: All authors

Corresponding author: Anjali V. Desai, MD, Memorial Sloan Kettering CancerCenter, 1275 York Avenue, New York, NY 10065; e-mail address: [email protected].

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AUTHORS’ DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

1-2-3 Project: AQuality Improvement Initiative to Normalize and Systematize Palliative Care for All PatientsWith Cancer in theOutpatient ClinicSetting

The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated. Relationships areself-held unless noted. I = Immediate Family Member, Inst =My Institution. Relationships may not relate to the subject matter of this manuscript. For moreinformation about ASCO’s conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/jop/site/ifc/journal-policies.html.

Anjali V. DesaiNo relationship to disclose

Virginia M. KlimekResearch Funding: H3 Biomedicine (Inst), Karyopharm Therapeutics(Inst)

Kimberly ChowNo relationship to disclose

Andrew S. EpsteinOther Relationship: UpToDate

Camila BernalNo relationship to disclose

Kelly AndersonNo relationship to disclose

Molly OkpakoNo relationship to disclose

Robin Rawlins-DuellNo relationship to disclose

Dana KramerNo relationship to disclose

Danielle RomanoNo relationship to disclose

Jessica I. GoldbergNo relationship to disclose

Judith E. NelsonNo relationship to disclose

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Appendix

In the 1-2-3 Program, oncology nurses assess patients’ palliative care needs and are the first responders to these needs, with support

from program tools and designated palliative care specialists when necessary. The Care, Coach, Consult approach of the program allows the

oncology nurse to reach out informally to a palliative care nurse practitioner for coaching (ie, advice/guidance) in providing primary

palliative care to patients. The palliative care specialist can also be engaged for formal consultation on patients.

As an example of a request for coaching (advice/guidance for primary palliative care) from the palliative care nurse practitioner, an

oncology nurse might ask about the starting dose of an opioid for an opiate-naıve patient with moderate pain not relieved by nonopioid

therapy. However, a formal, direct patient consultation might be requested for a patient with persistent pain after rotation through multiple

opioids associated with adverse effects.

In addition, oncology nurses are provided with algorithmic action pathways to help guide responses in specific situations. Examples of

action pathways for responding to patient reports of psychological symptoms at high levels of severity and to caregiver self-reports of high

distress are shown in Appendix Figure A2.

0

%

Pain

Fatig

ue

Nause

a

Constipat

ion

Trouble

sleep

ing

Trouble

breat

hing

Depre

ssio

n

Worry

about f

uture

Overa

ll dist

ress

Not at p

eace

10

20

30

40

50

60

70

80

90

100

None (0) Mild (1-3) Moderate (4-7) Severe (8-10)

Fig A1. Severity of symptoms as assessed from time of diagnosis (413 assessments from 58 patients).

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Desai et al

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Worst level ofdepression score 8

If yes, immediately referto psychiatry

If no, offer psychiatryreferral and/or palliative

NP referral

Worst level ofworrying about the

future score 8

Offer palliative NPreferral. Consider

psychiatry or SW referral.

Caregiver CSAQ highdistress score

Refer caregiver to SWMake additional caregiverreferrals based on SW's

recommendations

Assess whether thepatient has suicidal

ideation

Fig A2. Action pathway examples. CSAQ, Caregiver Self-Assessment Questionnaire; NP, nurse practitioner; SW, social worker.

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