IMPROVING SYMPTOM MANAGEMENT & QUALITY OF CARE FOR PATIENTS WITH PROSTATE CANCER AND THEIR PARTNERS

Transcription

1 IMPROVING SYMPTOM MANAGEMENT & QUALITY OF CARE FOR PATIENTS WITH PROSTATE CANCER AND THEIR PARTNERS Lixin Song, PhD, RN

2 OBJECTIVES Discuss symptoms, quality of life and related issues among patients with prostate cancer and their partners Describe ongoing PERC Program and potential implementation and dissemination approach Implications for practice Directions for future research

3 Estimated number of prostate cancer survivors

4 Stage Distribution (%) by Race and Cancer Type, Prostate Cancer Primary Treatment Patterns (%) by Age, Five-year Relative Survival Rates (%) by Cancer Type, Race, and Stage at Diagnosis, American Cancer Society. Cancer Treatment & Survivorship Facts & Figures Atlanta: American Cancer Society; 2016

5 Patients experience cancer and treatment-related symptoms that compromise their quality of life, regardless of the type of treatment they receive

6 Percentage Information giving Information clarifying/verifying Information seeking 20 0 Cancer diagnosis Comorbidity Current symptoms Survival/mortality Surgery Radiotherapy Watchful waiting/active surveillance Hormonal therapy Complications QOL Patients and their families may not get adequate support from health care professionals Side effects_urinary Side effects_sexual Side effects_bowel Side effects_hormonal SD Manage_Urinary SD Manage_Sexual SD Manage_Bowel SD Manage_Hormonal Treatment preference Percentage Information giving Information clarifying/verifying Information seeking Cancer diagnosis Comorbidity Current symptoms Survival/mortality Surgery Radiotherapy Watchful waiting/active surveillance Hormonal therapy Complications QOL Side effects_urinary Side effects_sexual Side effects_bowel Side effects_hormonal SD Manage_Urinary SD Manage_Sexual SD Manage_Bowel SD Manage_Hormonal Treatment preference D1 D2 D3 D4 D5 Song, et al (2017) Patient Educ Couns; Song et al. Health, 2016, 7:

7 Physicians mainly provided information during treatment decision consultations Patients were not active participants in communication. The participation of patients with low and moderate cancer risk: Moderate & high in discussing health histories Low in discussing survival/mortality Low & moderate in discussing treatment options None & low in discussing treatment impacts including side-effects and symptoms Song, et al (2017) Patient Educ Couns; Song et al. Health, 2016, 7:

8 HEALTH DISPARITIES Black Americans have the highest incidence and mortality rates Shrinking social network Interact more with family Masculinity/body image vs loss of control Comorbid conditions

9 Prostate cancer patients Often die from non-cancer causes Have high incidence of cardiovascular diseases Causes of death among cancer patients Zaorsky, et al (2017), Annals of Oncology

10 Context Of Cancer Survivorship & Crosscut Research Areas Cancer Diagnosis & Treatment Public Policy Patient Community Organization Health Care Provider Interpersonal Families /caregivers Outcomes Quality of life Physical Psychological Behavioral Social Spiritual Quality of care Access to care Satisfaction Individual Patient-family-provider communication Treatment decision making Satisfaction with care Health disparities Cancer care transition: Diagnosis Treatment Patient and caregiver health outcomes (Quality of life & Symptom management) Interventions to improve outcomes Health outcomes Use of health care services Treatment professional care Post-treatment self-care

11 Prostate Cancer: A Couple s Illness For patients in an intimate relationship, prostate cancer Creates fear and uncertainty in family Disrupts life plans Alters family roles, communication and relationship Partners: primary informal caregiver Information seeker, health monitor, negotiator, interpreter, and provider of care and support Although the disease is in his body. It is consistently in my mind. (Song et al, ONF, 2016)

12 Couple s illness Patient r.29 to.35 = Partner Patient r.25,.24,.23, &.23 = Partner Couples react to cancer as an emotional system Couples QOL is correlated Hagedoorn et al., 2008; Hodges et al., 2005; Kershaw et al., 2015 Song, et al, QOL Research (2011)

13 Couple s illness: Correlated QOL In Patients & Partners NIH National Research Service Award (F31NR010990, PI: Song) After controlling for time-invariant and time-varying covariates Patient s QOL > Partner s (P<.05) Phase effects: Localized (P<.05); Recurrent (P<.01) Time effects: NS QOL Patient Patient Partner 81 Partner Patient 79 Partner Localized Recurrent Advanced Phase of Illness Estimated differences in QOL scores between patients and partners facing different phases of cancer. The results were obtained by holding all other covariates constant. (Note: Higher scores indicate better QOL). [Song, et al, QOL Research (2011)]

14 Couple s illness: Factors influencing QOL in patients and partners Partners age Family income Social support Dyadic communication Patients education level Uncertainty about illness Prostate cancer symptoms General symptoms Figure 1 Figure 2 Song, L, Northouse, LL, Braun, TM, et al., QOL Research (2011)

15 Patient- Perceived Open Dyadic Communication R 2 =0.097 E1 Patient Appraisal of Illness.34** Patient Quality of Life R 2 =0.571 E3.204** Spouse Appraisal of Illness.38** Spouse Quality of Life R 2 = ** E4 Baseline (T1) Spouse- Perceived Open Dyadic Communication R 2 = month post-baseline (T2) E2 8-month post-baseline (T3) Path Analysis Results (Actor-Partner Interdependence Mediation Model) Note: Results are standardized. Control variables include age, education, and patient prostate cancer symptoms. RMSEA =.043; CFI =.989; CMIN/DF = p<.10; *p<.05; **p<.01. Couple s illness: Interdependence Correlated factors: appraisals of illness, perceived dyadic communication about cancer, and quality of life Patients and partners appraisals of illness and perceived dyadic communication were associated with QOL Patients perceived communication negatively influence partners quality of life Song, et al (2016), Supportive Care Cancer

16 Inter-Couple Couple 1 Couple n Intra-Couple Intra-Couple Patient 1 Partner 1 Patient n Partner n Intra-person Intra-person Intra-person Intra-person Couple s illness: Patients and partners perceived levels of open communication Similar at the time of diagnosis. Decreased over time in a similar trend, regardless of phase of illness Increased as they reported social support, uncertainty, and prostate cancer-specific symptoms in patients (e.g., hormonal symptoms). Not affected by couples demographic factors and general symptoms (Song et al, 2010; Song et al, 2011)

17 Symptoms and couples relationship have long-term impacts on prostate cancer survivorship. Decisional regrets years after treatment for prostate cancer: recent urinary bother satisfaction with understanding potential treatment side effects treatment effects on the spousal relationship (Morris, Farnan, Song, & et al, Cancer, 2015)

18 Couple s survivorship Journey The congruence on incidence of cardiovascular diseases and modifiable health behaviors ranged from 55% to 93% among survivors and spouses Song & team (in progress)

19 Prostate cancer Interventions: need to shift from patient-focused to family-focused Family interventions: : 29 RCTs (Northouse, Katapodi, Song, et al, 2010) : 50 RCTs (Ferrell & Wittenberg, 2017) Gaps in the literature Inadequate # of family focused programs that support most patients and families during care transition mhealth programs lack of tailoring to meet patients and partners needs Majority of RCTs are Psychoeducational interventions Couple-based interventions Mostly focused on White populations Strongly dose-dependent Most are in-person shifting toward mhealth or outpatient care as family caregivers become the primary providers of care

20 Summary Need for programs that Treat couples as a unit of care: negative appraisals and symptom distress open communication about cancer between partners supportive resources available from other family members and friends healthy behaviors during survivorship Scalable to meet the survivorship care needs of a large number of patients and partners Assess information needs related to prostate cancer and its treatment, side effects, other health concerns, and available support services and provide or refer survivors to appropriate resources to meet these needs. Assessment and Management of Physical and Psychosocial Long Term and Late Effects: Bowel dysfunction Sexual dysfunction/body image Sexual intimacy Urinary dysfunction Distress/depression/PSA anxiety etc Counsel survivors to achieve and maintain a healthy lifestyle: Healthy weight Increased physical activity Smoking cessation Healthy diet

21 Theoretical Framework (Adapted Stress-Coping Model) Couple-focused, tailored mhealth PERC Antecedents Secondary Outcomes Primary Outcomes PERSONAL FACTOR Demographic Comorbidities General symptoms COUPLE FACTOR Couple relationship quality CANCER FACTOR (Patient) Type of treatment Prostate cancer symptom APPRAISAL Appraisal of illness COPING RESOURCES Self-efficacy Social Support Healthy lifestyle behaviors Dyadic cancer communication PATIENT: Quality of life Physical Emotional Social Functional PARTNER: Quality of life Physical Emotional Social Functional

22 PROSTATE CANCER EDUCATION RESOURCES FOR COUPLES (PERC)

23 mhealth PERC? FOCUS (PI: Northouse) In-person has been tested in 3 RCTs over 16 years Implemented using group format in Cancer Support Community Network by agency staff (Michigan, Ohio, and California; N=70 Dyads) Supportive care remains the most common unmet needs for cancer survivors and their families (especially in rural NC) Stakeholder input

24 KL2TR001109, UNC LCCC Population Sciences Developmental Research Award, UNC Cancer Prevention and Control Intervention Research Pilot Award (PI & Scholar: Song)

25 Research Aims 1 st pilot study: Develop a Web-based, couple-focused tailored symptom self management program (PERC) Test the feasibility of PERC Refine PERC 2 nd pilot study Retest the usability of the refined PERC Test the feasibility of recruiting a geographic and sociodemographically diverse patient-family caregiver dyad population into a symptom management program Refine the study protocol for an RCT

26 Pilot Study Results Preliminary Findings PCa-specific and general symptoms (small effect sizes for patients and small-to-medium effect sizes for partners) Overall quality of life & Physical and social domains of quality of life for patients (small effect sizes). Web activity data indicated high PERC use. Participants reported: PERC easy to use and understand, engaging, of high quality, and relevant. Overall, participants were satisfied with PERC and reported that PERC improved their knowledge about symptom management and communication as a couple. Song, et al, ONF, 2015

27 Results to help finalize PERC Intervention Components Knowledge and skills training: symptoms and management Social support: Dyadic support Peer support Professional support Healthy behaviors Other considerations Format and platform vs availability of technology Timing Tailoring/controlled disclosure People who may not have access to the Internet or have low health/ehealth literacy

28 Pilot Study Results

29 To Test The Efficacy Of PERC On Improving QOL In A Diverse Population 1 R01 NR A1 (PI: Song)

30 Research Aims Assess the efficacy of PERC for improving QOL Test the effects of PERC on appraisals and coping resources Determine if patient race/ethnicity, education, type of cancer treatment, and couples relationship quality at baseline, moderate the effects of PERC on patient and partner QOL at the follow-ups

31 Methodology c o n s e n t Baseline survey (N=250 dyads) R a n d o m i z a t i o n Intervention NCI website (Attention control) VS PERC website Follow-up surveys at 4, 8, and 12 months Study Design & Timeline

32 Study Population and Settings Rockingham Forsyth Guilford Alamance Durham Nash Buncombe Henderson Iredell Davidson Randolph Catawba Rowan Lincoln Cabarrus Cleveland Gaston Mecklenburg Union Lee Harnett Wake Johnston Cumberland Sampson Wilson Wayne Duplin Lenoir Pitt Craven Legend Robeson Pender Counties From Which Study Population Are Drawn Eligibility Criteria Diagnosis: Newly diagnosed localized prostate cancer Earliest diagnosis date: 01/01/2018 Race: All races Ages: Columbus Brunswick New Hanover Improve access to care Reduce health disparities

33 PERC Contents: Couple working as a team Management of prostate cancer-specific symptoms (Urinary, sexual, bowel, and hormonal dysfunction Management of general symptoms (pain, fatigue, sleep problems and stress) Healthy behaviors

34 Updates: R01 from Recruited 35 dyads Intervention & feedback

35 Enhancing Survivorship Care Planning For Patients With Localized Prostate Cancer Using A Technology-based Symptom Selfmanagement Program 1 R21 CA (PI: Song)

36 Why the R21? Suggestions from patients and caregivers in pilot studies Standards of survivorship care planning require cancer centers to issue survivorship care plans after completion of treatment for curative intent (e.g., COC, IOM)

37 Survivorship care plan (SCP) Oncologist Survivor PCP Purpose of Care Plans Enhance communication Coordinate care Increase surveillance Identify & manage long term/late effects Encourage health monitoring & promotion Limitations of Current SCP: Generally positive endorsement of SCPs by survivors, PCPs, and oncology providers Non-conclusive evidence to-date

38 Research Goals 1 R21 CA (PI: Song) Explore/develop a new model to address the information and care needs for cancer patients and their families during transition from post-treatment hospital care to self-management at home To integrate an mhealth program (such as PERC) with the standardized mandated SCP To enhance SCP To disseminate mhealth programs via routine clinical practice

39 Specific Aims To examine the feasibility of delivering Enhanced SCP (ESCP) to survivors and partners To estimate the magnitude of benefit of ESCP. Health outcomes and use of cancer-related health services

40 Methodology Design: Aim 1: qualitative & quantitative mixed methods Aim 2: two-group randomized controlled pretest-posttest design Settings: UNC and Duke Cancer Hospitals Participants: N=50 patient-partner dyads Clinicians c o n s e n t Baseline survey R a n d o m i z a t i o n Control: SCP (Routine Care) VS Intervention ESCP Followup survey Post-exit interview

41 Experimental Group: ESCP SCP + PERC using Smart Phrase in EPIC system Insert PERC Smart Phrase Here

42 Results (Ongoing) Recruited 62 dyads (N=122) Randomized 46 dyads (N SCP =24. N ESCP =22) Racial/ethnicity: Patients: 78% were White; 22% were Black, Asian, and other Partners: 74% were White; 26% were Black and Asian Among 20 dyads who have completed T2 Men receiving ESCP tended to have better overall QOL and physical QOL comparing to men receiving SCP. QOL scores similar in social, emotional, and functional domains among all men. All QOL measures are similar among all partners.

43 Use of ESCP Most often used Firefox (30.2%), Safari (15.2%), and Chrome (34.2%) Most often visited: sexual dysfunction, couple working as a team, stress, sleep disturbance, fatigue, resources, physical activity, healthy eating, Most often downloaded files: healthy eating; list of help needs for family, choosing healthy meals, Tip sheets (e.g., healthy eating, saving on grocery, physical activities, etc) Number of visits Pages Hits

44 Brief Discussion: Lessons Learned Research adapted to support clinical practice Pragmatic concerns about implementation (time, personnel, resources, and format) Scalability: easily implemented by trained staff in health care settings with fidelity Addressing the Silver Oncologic Tsunami (Bluethmann, Mariotto, & Rowland (2016), Cancer Epidemiol Biomarkers Prev) Tech-savy generation is aging Technology vs in-person care Healthcare is a people business in need of technology, not a technology business in need of people -Jordan Shlain, MD and CEO of HealthLoop

45 Brief Discussion: Practice Implications Assess patients and caregivers care needs Develop family-focused program(s) to improve post-treatment self-care at home Deliver existing resources and evidencebased programs via standard clinical care practice (e.g., SCP) Modify evidence-based programs as needed

46 Direction for Future Research To understand & enhance selfmanagement experiences of diverse cancer patients and caregivers To use personalized, interactive, dyadic interventions that mimic faceto-face, professionally-moderated interventions To develop intervention to improve communication/information exchange about self-management among patient, family caregivers and health care providers to enhance cancer survivorship care

47 Acknowledgement Patients with cancer and their family caregivers Mentors and Colleagues: Laurel Northouse, Merle Mishel, Barbara Mark, Deborah Mayer, Darlene Moods, Bernadine Cimprich, Carolyn Sampselle, Paul Godley, Mathew Nielsen, Ronald Chen, Sarah Birken, Josephine Asafu-Adjer, Mark Weaver, Xianming Tan, Christine Rini Team Members: Fred Fuller, Sadiyya Ingawa, Kevin Su, Emily Mercer, Ting, Guan, Peirang Guo, Yousef Abdelkarim Mustafa Qanir Collaborators: CHAI core, RCA, NCCCR, NC TraCS RCMU FUNDING NIH Institutional NRSA Training Grant (T32 NR007073, PI: Sampselle) Indiana University Mary Margaret Walther Program for Cancer Care Research Predoctoral Scholarship (PI: Song) University of Michigan School of Nursing Doctoral Student Fellowship (PI: Song) NIH National Research Service Award (F31NR010990, PI: Song) NIH Institutional Training Grant (T32NR007091, PI: Mishel) UNC Health-e-NC Pilot Proposal Grant Award (PI: Rosenstein; Co-I) UNC LCCC University Cancer Research Fund (PI: Song) UNC LCCC University Cancer Research Fund (PI: Song) UNC IBM Junior Faculty Development Award (PI: Song) NC Translational & Clinical Sciences Institute (KL2TR001109, Scholar: Song) UNC LCCC Population Sciences Developmental Research Award (PI: Song) UNC Cancer Prevention and Control Intervention Research Pilot Grant Award (PI: Song) NIH National Cancer Institute (1 R21 CA ) (PI: Song) NIH National Institute of Nursing Research (1 R01 NR A1) (PI: Song)

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49 2 Patient-family-provider Interaction/ Communication & Quality Of Care

50 STUDIES Song, L., Tatum, K., Greene, G., & Chen, R. (2017). ehealth Literacy And Partner Involvement In Treatment Decision-Making For Newly Diagnosed Localized Prostate Cancer. Oncology Nursing Forum (Selected as a featured Journal Club Article) Song, L., Tyler, C., Clayton, M., Rodgiriguez-Rassi, E., Hill, L., Bai, J.B., Pruthi, R., & Bailey Jr., D.E. (2016). Patient and Family Communication During Consultation Visits: The Effects of A Decision Aid for Treatment Decision-Making for Localized Prostate Cancer. Patient Education and Counseling. doi: /j.pec Song, L., Toles, M.P., Bai, J.B., Nielsen, M., Bailey, D., Sleath, B., & Mark, B. (2015). Patient Participation In Communication about Treatment Decision-Making for Localized Prostate Cancer During Consultation Visits. Health, 7: Symes, Y., Song, L.,* Heineman, R. G., Barbosa, B.D., Tatum, K., Greene, G., Weaver, M., & Chen, R.C., (2015). Involvement in decision-making and satisfaction with treatment among partners of patients with newly diagnosed localized prostate cancer. Oncology Nursing Forum, 42(6): (* Correspondence author; First author: student.) Blackard, B., Farnan, L., Song, L., Addington, E.L., Mishel, M., Mohler, J., Chen, R.C., Nielsen, M.E., & Bensen, J.T. (2015). Treatment decisional regret among men with prostate cancer: Racial differences and influential factors in the North Carolina Health Access and Prostate Cancer Treatment Project (HCaP-NC). Cancer, 121(12): DOI: /cncr PMID: Song, L., Weaver, M.A., Chen, R. C., Bensen, J. T., Fontham, E., Mohler, J.L., Mishel, M., Godley, P.A., & Sleath, B. (2014). Associations Between Patient-Provider Communication And Socio-Cultural Factors In Prostate Cancer Patients: A Cross-Sectional Evaluation Of Racial Differences. Patient Education and Counseling, 97(3): Doi: /j.pec PMCID: PMC Song, L., Bensen, JT, Zimmer C., Sleath B., Blackard B., Fontham, E., Su L. J., Brennan, C.S., Mohler, J.L., & Mishel, M. (2013) Patient-Health Care Provider Communication among Patients with Newly Diagnosed Prostate Cancer: Findings from A Population-based Survey. Patient Education and Counseling, 91: DOI: /j.pec PMCID: PMC Song, L., Chen, R.C., Bensen, J., Knafl, G. J., Wallen, E. M., Pruthi, R.S., Nielsen, M., Mishel, M., Mohler, J.L., & Godley, P.A. (2013). Who makes the decision regarding treatment for clinically localized prostate cancer, patient or physician? Results from a population-based study. Cancer, 119: DOI: /cncr (Selected as a featured article for the cover of Cancer). Song, L., Hamilton, J. B., & Moore, A. D. (2011) Patient-healthcare provider communication: Perspectives of African American cancer patients. Health Psychology, 31: doi: /a