Chronic Illness & Everyday Priorities

Skip anything

Every question is optional. No one has to retell painful events, name a diagnosis, or choose a religion or identity to begin.

Pause or stop

Stop at any point. Nothing is sent anywhere, and nothing is shared unless the person chooses it in the sharing review.

Whose words

Record who said each thing: the person, a caregiver or surrogate, or a professional. A caregiver's needs get their own field.

Support to take part

Extra time, a quieter place, pictures, an interpreter or a trusted person can help someone say what matters. Ask what helps.

Barriers are not preferences

Cost, travel, work, housing, caring for others and digital access are written down as barriers, not as what the person wants.

Meaning, religious or not

Hope, purpose, faith, relationships and identity can be part of the conversation if the person wants. None is assumed.

• Primary care clinician: The overall plan, priorities across conditions, and follow-up.
• Specialist nurse or educator: Self-management support for a specific condition, where available.
• Pharmacist: Medicine review, side effects and simpler timing.
• Social worker: Costs, benefits, work and practical support.
• Chaplain or spiritual-care provider: Meaning, distress, hope and relationships, for people of any faith or none.
• Interpreter or communication specialist: Language and communication support so the person's own words come through.
• People the person chooses: Family, friends, or a community or faith contact, only if the person wants them. Never assumed safe, available or wanted.

Roles, titles and training differ by country and service. Not every role exists everywhere.

A purposive sample chosen for contrast, not a ranking or a representative survey: Global, United Kingdom, United States, Chile, Malawi, India, China, Japan, Jordan, Australia. Each example states what its source establishes and what it does not. Policy on paper is not proof that a service is available.

• Global · Policy · 2016

  WHO's 2016 report on its integrated people-centred health services framework says individuals and families need to be active participants in care, particularly for noncommunicable and chronic diseases, and lists shared decision making and self-management plans as options.

  What others could learn: A care plan for a long-term condition can treat the person and family as partners in co-producing care, with shared decision making and a written self-management plan as named parts of the service rather than add-ons.

  Conditions, limits and source

  Conditions that matter:

  The report ties this strategy to four others (governance and accountability, model of care, coordination, enabling environment) and says the mix of options must fit local context, values and preferences. Health education and help navigating the system are listed alongside.

  Cannot be inferred:

  Does not show that any listed option improves outcomes or lowers treatment burden; does not describe any country's actual practice; not binding on states; says nothing about what individual patients prioritize.

  Limits:

  Secretariat report that sets out the framework 'in brief' and invites the Health Assembly to adopt a resolution; adoption was not verified from the text read. The report says its policy options are a non-exhaustive list drawn from literature reviews, consultations and expert opinion, and are not evidence-based guidelines. IRIS dates the item 2016-12-31; the report itself is dated 15 April 2016. It does not address treatment burden or deprescribing.

  Source: World Health Organization (World Health Assembly, Sixty-ninth session), Framework on integrated, people-centred health services: report by the Secretariat (A69/39) (Table, Strategy 1 'Empowering and engaging people and communities', approach 1.1, printed p. 5 (PDF p. 5); options listed beside it include shared clinical decision making and self-management including personal care assessment and treatment plans). Where: Global. Population: People living with noncommunicable and chronic diseases, and their families. Published 2016-04-15; retrieved 2026-10-11.

• United Kingdom · Measured outcome · 2018

  In a cluster trial across 33 practices in England and Scotland (1546 adults with 3+ chronic conditions), 6-monthly patient-centered 3D reviews did not change quality of life at 15 months or reduce reported treatment burden.

  What others could learn: A review that asks what bothers the patient most, simplifies medicines and agrees a written plan raised patient-reported patient-centeredness here but did not lower reported treatment burden or number of drugs, so a conversation may need explicit steps to stop or simplify tasks.

  Conditions, limits and source

  Conditions that matter:

  UK general practice with registered lists, an electronic review template, practice nurses, a named physician and a pharmacist records review. Each review was two appointments plus the medication review, and the intervention arm had more nurse and physician consultations. Funded by the National Institute for Health Research.

  Cannot be inferred:

  Does not show that patient-centered care is ineffective in general: other designs or better delivery were not tested. Findings are for adults with three or more conditions in three UK areas, not other health systems, and the trial was not a test of deprescribing.

  Limits:

  Participants were not masked to group, though outcome analysis was blinded. Only 75% of intervention patients had at least one 3D review and 49% had both intended reviews. A process evaluation (PMID 31699734) concluded that implementation failure and intervention failure both contributed, citing inadequate skills training for patient-centered care planning. Quality of life was measured with the EQ-5D-5L (instrument named only). Full text also reports that measures of patient-centered care improved.

  Source: The Lancet (Salisbury C, Man MS, Bower P, et al.); abstract via PubMed, full text via PMC, Management of multimorbidity using a patient-centred care model: a pragmatic cluster-randomised trial of the 3D approach (Abstract, Findings; treatment burden and patient-centred care results in full text, Results (outcomes at 15 months)). Where: United Kingdom (England and Scotland). Population: Adults with three or more chronic conditions; mean age 71. Published 2018-07-07; retrieved 2026-10-11.

• United States · Measured outcome · 2019

  In a nonrandomized trial at one Connecticut primary care site, patients aged 65+ with 3+ chronic conditions in patient priorities care (n=163) reported a 5-point greater fall in treatment burden measure than usual-care patients (n=203).

  What others could learn: Asking an older adult to name health outcome goals and care preferences, then using them to decide which medicines, tests and self-management tasks to stop or avoid, was linked here to less reported burden. Priorities appeared in 66.3% of intervention visit notes and 0% of usual-care notes.

  Conditions, limits and source

  Conditions that matter:

  Ten primary care practitioners were trained in the approach; priorities were documented in visit notes. Staff time and training hours are not given in the abstract.

  Cannot be inferred:

  Not causal, since allocation was not random. Does not show better clinical outcomes, and medicines stopped (52.0% vs 33.8%) are not shown to be appropriate. A mostly white sample at one US practice may not transfer elsewhere.

  Limits:

  Abstract only; no open full text was found. Nonrandomized, one intervention site and one usual-care site; the priorities group was older with lower physical and mental health ratings, handled by propensity weighting. No difference on two other patient-reported measures (O-PACIC and CollaboRATE). The Treatment Burden Questionnaire (TBQ) is named only. Follow-up was at most 9 months.

  Source: JAMA Internal Medicine (Tinetti ME, Naik AD, Dindo L, et al.); abstract via PubMed, Association of Patient Priorities-Aligned Decision-Making With Patient Outcomes and Ambulatory Health Care Burden Among Older Adults With Multiple Chronic Conditions: A Nonrandomized Clinical Trial (Abstract, Results). Where: United States (Connecticut). Population: Adults aged 65+ with three or more chronic conditions; 95.6% white. Published 2019-12-01; retrieved 2026-10-11.

• Chile · Measured outcome · 2023

  In a telephone survey of 231 high-risk patients in a multimorbidity care model in southeast Santiago, 71% said primary team care for chronic disease improved versus before and 25.7% saw no improvement.

  What others could learn: Asking patients with many conditions whether care feels different from before can show which parts they notice (a case manager who calls, help with appointments) and where gaps remain, such as hospital-to-primary continuity.

  Conditions, limits and source

  Conditions that matter:

  Public system pilot with risk stratification, case management, self-management support and continuity roles. The survey sample averaged about 14 medicines and 8 to 9 chronic conditions per patient (the text and Table 1 differ slightly).

  Cannot be inferred:

  Not an effect estimate and not representative of Chile. Does not measure treatment burden, health outcomes or use of services. Perceived improvement is self-reported, and the results say nothing about centers outside the pilot.

  Limits:

  The model's designers wrote the questionnaire and ran the survey; no validated instrument was used. No comparison group, so 'improvement' is each patient's own comparison with earlier care. About 20% of patients could not be contacted. Ratings differed by health center. The lowest-rated item was continuity between primary nurses and hospital care. One of seven centers was left out for late implementation. Text and table give slightly different average counts of conditions and drugs.

  Source: BMC Public Health (Sapag JC, Martínez M, Zamorano P, et al.), Evaluation of patients' perspective on a multimorbidity patient-centered care model piloted in the Chilean public health system (Results, Quantitative results (question eleven); overall rating and lowest-rated item in Abstract, Results). Where: Chile (southeast Santiago). Population: High-risk adults with multimorbidity who had at least one face-to-face visit in 2020; survey sample mean age 66, 74% women. Published 2023-11-16; retrieved 2026-10-11.

• Malawi · Service in operation · 2020

  In rural Neno district, Malawi, an integrated HIV and NCD clinic saw patients at their nearest health center, monthly if complex or new and otherwise every 3 months; one-year retention was 72% for NCDs.

  What others could learn: Where staff, drugs and distance limit chronic care, visits at the nearest facility on a fixed rhythm with community follow-up can keep many people in care; ask what stops people returning, because about one in four NCD patients defaulted within a year.

  Conditions, limits and source

  Conditions that matter:

  Built on an existing HIV platform. Hospital staff traveled to health centers 3 or 4 days a week, over 900 community health workers supported follow-up, and the authors state that human resource and drug shortages remain real constraints.

  Cannot be inferred:

  Not a comparison with other models. Retention is not the same as clinical benefit, and the study did not measure patient priorities or treatment burden. Not representative of Malawi, and not proof the clinics still run as described.

  Limits:

  Observational routine data with no comparison group; outcomes for people who defaulted are unknown, and some may have died. Default tracking for NCDs began in mid-2017 versus 2007 for HIV, so NCD and HIV retention are not like for like. Some one-year clinical data are missing. Authors are programme staff (Partners In Health with the Ministry of Health). Reported NCD default was 25.5%.

  Source: BMJ Open (Wroe EB, Kalanga N, Dunbar EL, et al.), Expanding access to non-communicable disease care in rural Malawi: outcomes from a retrospective cohort in an integrated NCD-HIV model (Methods, 'IC3 program design'; retention figures in Abstract, Results). Where: Malawi (Neno district). Population: Patients with HIV (3334) or noncommunicable diseases (2990, mostly hypertension, asthma and epilepsy) enrolled January 2015 to December 2017. Published 2020-10-21; retrieved 2026-10-11.

• India · Reported experience · 2024

  In interviews with 31 adults with multiple long-term conditions at Kerala family health centres, participants who could not get all medicines at one point of care described added travel, expense and effort to remember where to buy each.

  What others could learn: Before adding or continuing a medicine, ask which of the person's medicines they can get where, and what each trip and purchase costs; consolidating prescriptions and supply points may lighten the load.

  Conditions, limits and source

  Conditions that matter:

  Public primary care that stocked some diabetes, hypertension, respiratory and cardiovascular medicines but not all, with care split across health centres, private pharmacies and a tertiary medical college. Kerala was strengthening primary centres under its Aardram Mission.

  Cannot be inferred:

  Not prevalence. Does not describe other Indian states or private-sector care, and does not show whether stocking has changed since 2022. Cost amounts were not quantified.

  Limits:

  Interviews took place in public health centres, so people who do not use them are excluded. Two interviews ended early when patients went back to their consultation queue, and patients judged too ill by nurses were excluded. Self-reports only; no cost figures were measured.

  Source: PLoS One (Joseph L, Krishnan A, Lekha TR, et al.), Experiences and challenges of people living with multiple long-term conditions in managing their care in primary care settings in Kerala, India: A qualitative study (Findings, 'Care-coordination maze', sub-theme 'Medication management; an uphill battle'). Where: India (Kerala). Population: 31 adults aged 41 to 82 with two or more chronic conditions (27 had diabetes, 27 hypertension). Published 2024-06-13; retrieved 2026-10-11. Source in English; summarized from our own translation, not an official one.

• China · Reported experience · 2026

  In interviews with 20 rural Zhejiang patients with multimorbidity, participants said physicians' behaviors, from poor communication and no medication review to clear guidance and follow-up, shaped how heavy their medication burden felt.

  What others could learn: A medication review, a plain explanation, follow-up by phone or message, and a plan adjusted to cost or mobility (for example a cheaper alternative, or longer prescriptions for people who cannot travel) were described as lightening burden.

  Conditions, limits and source

  Conditions that matter:

  Township health centers under the National Essential Medicines List with zero-markup pricing, which the authors say often causes shortages and trips to county hospitals. Physicians act as both clinician and pharmacist, and referral gatekeeping is not enforced.

  Cannot be inferred:

  Not representative of rural China. Does not show that these behaviors reduce burden, and says nothing about urban or higher-level hospitals. Participants' views of physicians were not checked against physicians' accounts.

  Limits:

  Four health centers in one province; all participants were Han Chinese; people with terminal illness, cancer or dementia were excluded. Self-reported, with possible recall and social desirability bias. The authors report saturation after 16 interviews, although 20 were enrolled. The study does not quantify burden or link physician behavior to outcomes.

  Source: Frontiers in Medicine (Lu Y, Hu F, Yan M, et al.), Experiences of medication burden among patients with multimorbidity in rural China: a qualitative study (Abstract, Results; examples in full text, Results ('Physician behaviors influencing the medication burden')). Where: China (Zhejiang Province). Population: 20 adults with two or more chronic conditions using two or more medicines; mean age 65.5, 55% women. Published 2026-04-21; retrieved 2026-10-11.

• Japan · Reported experience · 2023

  In focus groups with 35 Japanese physicians and pharmacists, participants described using motivational interviewing, reassurance that stopped medicines can be resumed, and non-drug options in deprescribing conversations with older adults who have multimorbidity.

  What others could learn: Deprescribing talks may go better when the clinician waits for readiness (a change in health status, a wish to take fewer tablets), says a stopped medicine can be restarted if needed, and offers non-drug options.

  Conditions, limits and source

  Conditions that matter:

  Clinicians described continuity (seeing the same patients across visits), multidisciplinary work and pharmacist partnership as helping, and outpatient time limits and multiple agendas as barriers.

  Cannot be inferred:

  Not what patients wanted or experienced. Not evidence that these tactics work or are safe for a given medicine, and not representative of Japanese prescribers.

  Limits:

  Clinicians' views only; patients were not interviewed. Purposive sampling chose providers already active in deprescribing, and the authors note possible social desirability bias in group interviews. They also note participants were more optimistic than in earlier studies. No patient outcomes were measured.

  Source: International Journal of Environmental Research and Public Health (Ie K, Machino R, Albert SM, et al.), Deprescribing as an Opportunity to Facilitate Patient-Centered Care: A Qualitative Study of General Practitioners and Pharmacists in Japan (Results, Theme 6, Sub-Theme 6.3 'Applying Motivational Interviewing Strategies'). Where: Japan. Population: 35 physicians and pharmacists experienced in deprescribing, discussing older adults with multimorbidity. Published 2023-02-17; retrieved 2026-10-11.

• Jordan · Service in operation · 2021

  A 2017 evaluation of an MSF primary-level NCD program in Irbid, Jordan, for Syrian refugees and vulnerable Jordanians reported blood pressure and glycemic improvement and listed added psychosocial, referral, home-visit, physiotherapy and social worker services as essential adaptations.

  What others could learn: For people with several chronic conditions in displacement, clinic medicine alone left gaps; the services added in response point to what to ask about: mental health, mobility, social needs, cost and who can arrange referrals.

  Conditions, limits and source

  Conditions that matter:

  Humanitarian funding, a multidisciplinary team and free-of-charge care in a regulated middle-income health system. The authors say war and the refugee experience affected patients' ability to engage and suggest simplifying the model to cut cost.

  Cannot be inferred:

  Not proof the program still operates in this form, not Jordan's public system, and not transferable to non-humanitarian settings. Clinical improvement was not compared with a control group, and patient priorities were not measured.

  Limits:

  Several authors were MSF staff who helped design the program and the study (declared). The program enrolled 23% of Syrian adult refugees with NCDs in Irbid. Per patient per year cost rose from INT$ 1424 (2015) to 1904 (2017), and low-cost referral options were inadequate. Retrospective data, and the abstract describes no control group.

  Source: BMC Health Services Research (Ansbro É, Homan T, Qasem J, et al.), MSF experiences of providing multidisciplinary primary level NCD care for Syrian refugees and the host population in Jordan: an implementation study guided by the RE-AIM framework (Abstract, Results; cost and affordability detail in full text, Results and Discussion). Where: Jordan (Irbid governorate). Population: Syrian refugees and vulnerable Jordanians with NCDs; cohort mean age 54.7, 71% with multimorbidity. Published 2021-04-26; retrieved 2026-10-11.

• Australia · Reported experience · 2019

  In interviews with 26 adults using a Top End (Northern Territory) renal service, one third reported difficulty understanding their doctor or clinic, citing complex language, rapid speech, unfamiliar accents and too little time for explanation.

  What others could learn: Check understanding rather than only giving information: allow time, avoid jargon, offer an interpreter, and ask what the person knows about their kidneys and options. Participants also recommended a patient reference group to shape the service.

  Conditions, limits and source

  Conditions that matter:

  A large government service where many clients relocate from remote communities for dialysis. An Indigenous liaison officer supported the interviews, and the service later set up an Indigenous Patient Reference Group.

  Cannot be inferred:

  Not representative of Australia or of all Aboriginal people, and not about kidney care elsewhere. Does not measure outcomes or treatment burden, and one third reporting difficulty is not a rate for other services.

  Limits:

  Participants spoke English (an interpreter was offered), so people needing an interpreter may be under-represented. Volunteer bias is acknowledged. People newly on maintenance hemodialysis within 90 days and acute hospital-based patients did not take part. Several authors were service clinicians or leaders. One service, and the study did not measure quality of life.

  Source: PLoS One (Hughes JT, Freeman N, Beaton B, et al.), My experiences with kidney care: A qualitative study of adults in the Northern Territory of Australia living with chronic kidney disease, dialysis and transplantation (Results, 'Knowledge gaps'). Where: Australia (Northern Territory, Top End). Population: 26 adults with chronic kidney disease, dialysis or a transplant; 21 identified as Indigenous; mean age 55.5. Published 2019-12-19; retrieved 2026-10-11.

• The sourced examples include policy, measured outcome, service in operation, reported experience. Each quote was matched to the source text; that is not independent expert review.
• The prompts and fictional case are original. They have not been tested with patients, caregivers or clinicians.
• Whether this workflow helps anyone is an open research question.
• Content is in English. Interface translations are not reviewed for this topic.