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Table 3 Overview of identified needs

From: Identifying and understanding the health and social care needs of older adults with multiple chronic conditions and their caregivers: a scoping review

First Author Publication Year Actual Needs identified by older adults
Adeniji 2015 The needs which were identified most frequently (50% or higher) included: ‘Lack of information about my medical condition’ (55%) ‘Poor communication between different doctors or clinics’ (55%) ‘Lack of information about treatment options’ (60%) ‘Having to wait a long time to get an appointment for specialists (hospital doctors)’ (60%) ‘Lack of information about why my medication was prescribed to me’ (50%)
Ancker 2015 Some patients perceive medical records management as the team’s responsibility whereas other perceived it as their own. Patients make judgments about what data is relevant to their health. Managing transfers of medical information to solve problems such as health insurance denials is a tremendous amount of work that goes unrecognized.
Ansari 2014 New COPD diagnosis motivated participants to modify healthcare behaviors such as need to include physical activity and monitor diet; lack of communication between the participants and their physicians; expressed the need individualized plan and support for smoking cessation. The participants found managing MCC challenging due to the need to consume various medications and schedule various appointments, and voiced that after some time, the meds stop working. Participants who were most affected by arthritis and then developed COPD, found it quite challenging due it causing breathing difficulty, an additional problem with arthritis.
Barstow 2015 The patients describe their experiences but did not identify needs
Bayliss 2007 Self-reported health status: 12% excellent/very good; 38% good; 36% fair; 14% poor. Multivariable model was constructed: After adjusting for effects of multimorbidity, psychosocial factors were independently associated with health status and physical functioning. Greater disease burden, persistent depressive symptoms and financial constraints were associated with both lower health status and lower physical functioning. Symptoms and and/or treatments interfere with each other, and combined with a lower income level, were associated with lower physical functioning. Higher levels of patient-provider communication were associated with lower levels of physical functioning. Interactions were found between disease burden and communication, financial constraints, and the compound effect of conditions; additionally, impact of certain barriers may not be constant across the range of morbidity. Other factors that were significantly associated with the outcomes but did not contribute to the final models include: self-efficacy, being overwhelmed by a single condition; knowledge about medications and health literacy.
Bayliss 2003 patients were asked what barriers to their self-management was and the barriers included the self-care required for one condition could make the self-care for another condition difficult, the advice was sometimes incompatible, the symptoms influence each other and the medications can cause symptoms of the other disease worse, lack of knowledge, financial constraints to pay for all treatments, emotional stress of the diseases, need for adequate communication with providers, need for social support, need for understanding conditions and logistical issues dealing with multiple conditions.
Beverly 2011 Prioritizing health conditions: (i) Most patients acknowledge that complications of their diabetes motivated them to pay greater attention to their diabetes to diminish the progression of these complications. (ii) Patients reported prioritizing health conditions and severity or importance. (iii) Patients described feeling frustrated, confused, and overwhelmed in response to conflicting recommendations, particularly for diet, physical activity and medication regimens.
Bunn 2017 Both patients with dementia & caregivers expressed the need for continuity of care and involving them in the decision making process.
Burton 2016 In the interview asking the participant about their health. The participants who all had vision loss indicated challenges to accessing information, being dependent on family and friends to read letters and other information. The family physician was acting as another barrier to information and appointment attendance. Patients want their family physician to better coordinate care for persons with vision loss and other health conditions.
First Author Publication Year Actual Needs identified by older adults
Cheraghi-Sohi 2013 Patient had a need for control and knowledge about their conditions. Patients had fluctuating priorities highlighting the importance of regular assessments during clinician-patient consultation to allow for better treatment planning. Patient priorities shift according to perceptions of control and/or interactions with clinical professionals. Focusing on management of only one single condition can lead to worse self-management.
Clarke 2014 They want their family physician to be thorough, they want to be referred to the expert, and they want their family physician to build a good trusting relationship for them. A third want their family physician to have a more person centered approach to decision making
Coventry 2014 Successful self-management in multimorbidity hinged on the interplay and interdependence between contextual factors related to1) patients capacity (access to resources), knowhow and confidence and physical and emotional abilities to accomplish self-management activities; 2) Responsibility was successful to self-management - patients had to be responsible for self-management tasks; 3) patients had to be motivated to manage their condition
DiNapoli 2016 Access to providers, asking for preference in provider, wanting their health care provider to build a doctor patient relationship, working together with the patient in a timely matter. To address mental health issues in the treatment for their chronic conditions. Advocate for the use of mental health services, advertise services available
Fortin 2005 Access to the family physician or specialist can be complicated due to automatic telephone messages, long waiting lings or the number of phone calls required. It creates anxiety. Also the waiting times in the ED are long and it is not clear when it is an emergency that they need to go to the ED (lack of capacity to determine the seriousness of the illness). Similarly there are long waiting times to see a specialist and the need for a referral is a barrier to access care. However, utilizing the family physician to determine whether ED or a specialist was needed could also speed up the access to care.
Fried 2008 1) Participants spoke about the concern with competing outcomes - the adverse effects of medications was a competing outcome that influenced their treatment decision making. 2) Participants spoke about global cross-disease outcomes (like preventing a stroke or heart attack) instead of disease specific outcomes (like lower blood pressure); Preference was for the treatment that would achieve the most desired outcome
Gill 2014 Patients reported lack of timely information and poor communication between health care providers and they had difficulty with symptom management and adhering to treatment recommendations. The patients complained about excessive wait times to see specialists. Furthermore, they had difficulty coordinating their care and medical trainees were even not consulting with their supervisor. Patients indicating not know how to prioritize their care and needs.
Hansen 2015 Patients expressed that there is no thorough explanations of the diagnoses by the specialists requiring them to go to their family physicians for clarity; need to have transfer of communication between family physicians and the specialists so family physicians are adequately informed of the patients’ MCC; difficulty understanding technical terms/jargons; patients expressed that they want to be seen by their family physicians as a person and not merely a number
Kuluski 2013 4 main themes:
health maintenance; health improvement; behavior change; and preparation for future needs.
‘-Most patients wanted to prevent aggravating their health and chronic condition; these related to: avoiding inability to perform tasks because of pain;
-Improvement matters to resume participating in physical and social activities that they were used to.
-Behavior change was expressed as a need for losing weight and exercising, and being able to do more to relieve their caregivers;
-Some expressed the need for preparing for the future which meant having home support, transitioning to a long term care facility. This was not always preferred; some wanted to stay and get help at home.
First Author Publication Year Actual Needs identified by older adults
Lo 2016 Both patients and caregivers emphasized the key role of self-management, socio-economic situation and negative experiences as key in their health care as well as 5 health care service level factors empowerment of patient and the caregiver, access to care, poor coordination of care, continuity of care and poor recognition of psychological comorbidities. Being from a non-English speaking background led to difficulties in patient education, and self-management particularly with regard to nutrition. There is an extra financial burden due to due to transportation costs, paying for medication, marking and for maintaining a healthy lifestyle as well as community services that were used. The person who feels not well fatigue and disability impacted special life and relationships in a negative way. Psychiatric comorbidities such as depression make health self-management more difficult. Patients want more education to understand their disease, how to manage and the adverse outcomes. They appreciated support groups and sell-directed eLearning. The information should have been more combined for all diseases; the patient education material can be contradictory. There are problems with the coordination of care due to poor communication between hospital and primary care. Patients experience problems due to specialty boundaries, health care providers were unwilling to provide advice or offer help with problems that were not their scope. Patients experience a lack of continuity in care many different specialists with conflicting opinions. They felt one person should be in charge such as the PCP. Appointments should be scheduled so they don’t clash. Lack of access, lack of close by parking, too short consultation time, lack of interpreters, difficulty reaching health care providers,
Loeb 2003 Patients described periods of gaining, losing, and maintain capabilities through their experience of living with multiple chronic conditions. The main need was to maintain current capacity to perform activities of daily living. Following a period of declining capabilities (like a hospitalization); they worked towards a process of regaining capabilities to reestablish their previous health state. Coping strategies used to keep what they have included: relating with health care providers, medicating, exercising, changing dietary patterns, seeking information, relying on spirituality and/or religion, and engaging in life
Mason 2016 Complicated, confusing and sometimes unresponsive services.
- Lack of care coordination and continuity among service providers
- Attending clinics was physically demanding.
- Frequent changes to medication changes cast doubts on their use.
- Some perceived their care to be poorer because they are older (experiencing inequity).
- Focused on living life to the fullest in the present. Thus, some participants avoided advance planning and only sought help when they were very ill or unable to cope. Deteriorating health was perceive as a manifestation of aging and thus delayed seeking help. Delaying services was furthermore seen as a way to preserve autonomy.
McDonall 2016 communication (understanding and being understood), transportation/mobility issues, access print, communication with health/service providers in the community, and training how to use technology, assistance with errands, information about assistive technologies for hearing, activities to participate in. In terms of the services they would have liked to have included transportation, older blind program, volunteers to assist with daily activities, and a senior center. They also discussed that health care providers should receive education on how to approach persons with a dual sensory impairment to maintain their dignity.
Morales-Asencio 2016 They had limited resources and there lots of barriers, lack of elevator in building, health care providers were not proactive in providing all information. Maintaining lifestyles was difficult. Implementing a treatment was difficult for some patients, and took time and effort. Lack of coordination of care, fragmentation of care. No clear care pathway when issues arise leading to ED visits. Not enough information given by provider for disease self-management. If support is offered it is helpful for adaption to the illness and treatment adherence. Health care services are fragmented and not adapted to persons with complex needs.
First Author Publication Year Actual Needs identified by older adults
Naganathan 2016 Patients
- Some felt a loss of independence and less in control
- Patients emphasized wanting to remain at home and not be institutionalized- echoed by caregivers and physicians.
- Sources of tension between patients, caregivers, and HCPs- discordance between patients’ perception of their independence and the amount of support are needed. Sometimes leading to caregiver burnout when family refuse help.
- highlighted the importance of social networks.
Noel 2005 Illnesses had a significant impact on their daily life activities, work activities, social and family life. Uncertainty about their prognosis and inability to plan the future were important stressors. There were several problems with the health care system: 1) ling waits for referrals; 2) lack of continuity between clinics; 3) access to urgent care was not ideal; 4) poor communication with provider. Physicians had too many patients, were too busy or did not have enough support to provide care they needed. The time allowed for appointments was not long enough to discuss their health care needs. As they had many appointments scheduling was difficult to avoid impacting their work and family life. Patients felt specialists do not take their complaints seriously.
Ravenscroft 2010 -Fragmented care delivery: location of services across multiple locations, even within a single organization; lack of access to patient information leading to duplication of investigations, other problems;
-Fragmentation complicated by health care provider’s time, information sharing with patients; logistical problems in keeping appointments such as transport, parking, etc.
-MCC patients’ issues magnified with seemingly small health care issues, as these were repeated, increasing frustration levels, and finding solutions over and over again.
Discovering the health system:
-Process of ongoing discovery about the social structures within the health care system: patients perceived different parts, and constructed their own theories about it; providers difficult to differentiate between specialties, ranks and roles; regulation of interactions between them and providers; avoidance of MCC patients, referring them to others; reasonable expectations from the system were more often unrealistic;
Managing the health care system:
-patients strategized navigating the system; monitoring their care; they actively advocated through asking questions, voicing concerns and even ‘directing’ their providers; building and maintaining connections and relationships with trusted providers, and sought opportunities to end relationships with providers they did not trust; taking advantage of loopholes such as appointment cancellations to.
Richardson 2016 Veterans ranked their prioritization of their conditions according to: 1) perceived role of the condition in the body - that is, how the condition linked with the overall body function; 2) how the individual self-managed their conditions; 3) dealing with pain; 4) health care perception of which condition to prioritize
Patients prioritized conditions by family history anticipating the same outcomes; impact on other conditions, daily activities such as mobility; and that have potential serious consequences if unmanaged. They also lacked knowledge about root causes of the conditions.
Among self-management tasks, they prioritized conditions which required medical monitoring, felt in control of, activities based on financial costs, newer conditions requiring changes to daily routines.
Patients prioritized pain management.
Patients did not disclose their priorities to their HCPs. However, according to the patients, their HCPs have suggested which conditions to prioritize.
Roberge 2016 There were time constraints and patients hesitated to talk about their mental health. Not all patients wanted to talk about both their chronic condition and their mental health problem at the same family physician visit. Patients. felt stigmatized because of their mental health problem. Patients felts there are a lack of access to psychotherapy. Patients also reported lack of availability, costs, compatibility, language difficulty accessing services and their clinician’s lack of knowledge of available resources.
First Author Publication Year Actual Needs identified by older adults
Roberto 2005 The women identified nine problems associated with their health concerns: pain, falls, functional limitations (e.g., activities of daily living [ADLs], instrumental activities of daily living [IADLs]), sleep disturbances, reduced energy, psychological distress (e.g., stress, worry), financial strain, medications, and compliance with treatment regime. The combination of problems attributed to different conditions increased the magnitude of the effect the women’s health had on their daily lives. Pain and a decline in energy frequently interfered with completion of daily activities. To compensate for this, many women reduced and slowed down the pace of activities they performed while emphasizing the importance of maintaining independence Appreciative of support from family members, at times the women received more help and advice than they preferred. Accepting health-related changes was not always easy for the women and often was complicated by the response and intended support of others
Ryan 2016 -Social isolation and unmet social needs: High needs patients showed emotional distress in last 2 years; 37% felt socially isolated, including lack of companionship, feeling left out, lonely and isolated as compared to 15% other adults in the sample.
-Delaying care: 44% high needs patients reported delaying care due to an access issue- 22% transport as compared to 4% other adults; limited clinic hours; 29% due to inability to get appointments.
-95% of high need patients had a regular doctor/clinic; 65% high need and 68% older adults were able to get answers to medical queries;
-35% high need patients reported easily accessing care after hours without going to the emergency room, as compared to 53% other adults.
--Assistance in managing conditions:
-For stress, 43% could access counseling services when wanted; of the 53% high need patients needing multiple providers, 43% had a provider coordinating treatment; Of the 57% having issues with ADLs, 38% had someone to help them; 3/4th of which were relatives;
-Insurance was also important:
--Patient centered communication: 60% high-need patients had providers who fully engage in patient-centered communication, compared to other adults (52%). However, 82% of high-need adults were less likely to report that providers involve them in treatment decisions vs. 90% of others; 85% vs. 91% would listen carefully to them.
Schoenberg 2011 1) Participants viewed multimorbidity as more than the sum of its individual conditions. This led to worry over negative health consequences and conflicting and confusing treatment. 2) Community conditions including scarcity of personal resources, in adequate transportation to health care appointments, health care provider shortages, and insufficient healthy choices/resources undermined their self-management. 3) They managed their multimorbidity by settling into a routine that was often at odds with biomedical recommendations, but ones that worked for them.
Sheridan 2012 The visits with their family physician are short, mostly to describe pills, and lack of involved of practice nurses. Many reported feeling lonely, sad and suicidal. Most participants wanted to self-manage their conditions but they needed more information. The patients received conflicting messages from the different clinicians, feel that their provider do not communicate. Patients felt not being heard, there was difficulty in communicating and anger and mistrusts. Patients felt powerless.
Zulman 2015 3 Major themes
1. Managing a high volume of Information and Tasks: -High volume of records from multiple systems; absence of a comprehensive system in emergencies; Paperwork increases with each encounter with a provider; self-management routines to manage medicines, diets, etc.; -Health information: usually disease specific info available; condition interactions, risk of medication interactions, especially with multiple providers not available. Complicated medication regimes; patient may be the only person aware of it; multiple self-management tasks required throughout the day; multiple appointments to manage. -Communication: Complexity of MCC makes it difficult to seek care from new providers. 2. Coordinating multiple providers: almost no opportunity to involve multiple providers in a single discussion on management. 3. Serving as Expert and advocate: patients find themselves isolated/alone to resolve needs. -Peer support: difficult to find. -Caregivers: get overwhelmed with complexity and number of MCCs.
First Author Publication Year Actual Needs identified by caregivers
Bunn 2017 Family members expressed the need to take charge to aid in getting continuity and access to services for their loved ones with dementia. They need to advocate for services and participate in medical decision making for the person living with dementia. They also played active role in coordinating care and services as well as navigate the healthcare system such as for arranging appointments and associated transportation needs, managing medications and serve as a means of communication between various providers. Caregivers reported formal support for persons living with dementia as inadequate. Lack of seamless sharing of information between various HCPs from different specialties. They identified a gap between the social care and healthcare and expressed the need for collaboration between them. As, this gap increases the risk for adverse events such as hypoglycemia.
Gill 2014 Caregivers also indicated long wait times, poor communication and lack of care coordination. It was difficult managing appointments with their work; they prefer to have a point person to talk to arrange care. Caregivers describe intentional noncompliance by the patient and due to complex city, facing stress from high risk decisions, feeling pressured and hopeless.
Kuluski 2013 6 themes, of which first 3 were the same as patient goals. For future needs preparation, they wanted the patients’ acceptance for services.
-Health maintenance: keep up a social network and involved in activities, e.g. through regaining mobility and pain management; having a caregiver to rely on; acceptance of care from outside by the patient.
-Doing tasks for the patient: some wanted to continue tasks for the patient, e.g. keeping appointments, medication management, nutrition;
-Keeping the patient safe; with dignity so that patients don’t feel that they are being treated as invalid; which would also promote acceptance. Safety a major concern for dementia patients.
-Helping patients maintain dignity, particularly at the end of life.
-Stress management a major concern, to at least ‘keep sane.’
Mason 2016 Being a carer was not a choice.
- carers experience physical and emotional stress
Naganathan 2013 Caregivers
- Sources of tension about disagreement between patients and caregivers about future plans, and how to stay healthy and safe.
- Emphasized the importance of formal supports for IADLS to alleviate caregiver burden and improve patient-caregiver relationships.
- Felt immense burden with navigating healthcare system to obtain sufficient home care services.
First Author Publication Year Actual Needs identified by health care providers
Ancker 2015 Providers need easy access to their patients’ information to make the best care decisions. Providers also talked about patient’s health literacy - for example patients selective reporting of information. Physicians often recognized that the patients understanding of the health care system influenced the way they shared their medical histories.
Bardach 2012 The physicians believed that their patients lacked the resources to follow prevention recommendations; the lack access to exercise, financial restraints to exercise or buy healthy food, lack of community resources, uninsured patients who have no access to resources. System barriers were also reported, time restraints, lack of reimbursement for preventative counseling. There is also a lack of care coordination particularly in the absence of EMR.
Barstow 2015 The HCPs described how comorbidities increased the number of visits, more visits cancelled and the need to collaborate with the caregivers well as the need for home visits. Nearly 60% identified a need for case coordination and many needs for referrals to other health care providers such as psychologists/counselor, physicians and diabetes educator
First Author Publication Year Actual Needs identified by health care providers
Bunn 2017 HCPs used practices for alleviating the impact of living with dementia by reminding them of upcoming appointments, providing them with longer appointment times and same HCP that saw patient and carer. HCP need structured way of preparing for the progressing dementia and resultant worsening symptoms, which may lead to dropping out of the system leading to increased risk for adverse outcomes such as medication errors, caregiver burnout. HCPs spoke about the importance of personalizing care for the person living with dementia
Coventry 2014 Same needs as identified by patients because patients and HCPs data were analyzed together.
Gill 2014 The family physicians also discussed lack of access to care, poor communication and coordination, long wait times, and challenges with compliance, lack of home care for instrumental activities of daily living limitations, dealing with multiple specialists
Grundberg 2016 Patients often do not actively disclose mental health issues. There needs to be continuity of care and time to engage patients in dialogue about mental health. Common health issues in this population: depression, anxiety, sleeps problems and phobias. Patients need prompt psychiatric consultations. District nurses (DNs) need better teamwork with other HCPs so participants can increase their abilities in assessing and addressing mental health issues. DNs need to be more educated about mental health promotion activities and available resources for the patients. Older people with multimorbidity primarily lived alone and felt lonely which contributes to developing depression (especially affected women). Homebound seniors with few visitors are especially at risk for isolation and worsened mental health.
Hansen 2015 Specialists need to thoroughly inform family physicians about their patients’ diagnoses; due to lack of communication on diagnoses, family physicians spend a large sum of time to understand patients’ condition on their own and also to explain then to the patient; family physicians find this challenging due to a full waiting room; patients requires diseases to be explained at their level of understanding; patients identifies their issues based on symptoms and not necessarily according to prognosis e.g. vertigo
Kuluski 2013 Family physician goals ‘4 similar themes:
-help maintain patient independence
-heal, fix or improve symptoms when possible,
-mobilize care for the patient and the caregiver
-address safety issues.
For the above goals, family physicians focused on preparing both patients and caregivers for worsening of health; maintaining independence; heal, fix or improve symptoms; particularly helping with acute exacerbations of conditions; family physicians emphasized supportive services and infrastructure, such as home care for safety, for both patients and caregivers; patient acceptance of these. For aging caregivers, stress was an important aspect to focus on to keep them healthy.
Naganthan 2013 Family physicians
- physician reported a contradiction in that patients and caregivers refused additional support to stay at home when they desire to stay at home.
- Caregivers who are heavily or exclusively relied upon by the patients tend to experience higher burden than those who receive support.
- Some tension between physicians and families related to safety concerns.
- Caregivers are viewed as key in navigating healthcare system and being the patients’ advocate
First Author Publication Year Actual Needs identified by health care providers
Roberg 2016 The clinicians reported challenges with adherence as these patients required patient education and regular follow-up, they were often on a complex medication regime and they did not want more medication. Polypharmacy was also a challenge. The want more training on polypharmacy, more psychiatry rounds and more about different pharmacological options. The physicians reported it was difficult to obtain a consultation from a psychiatry in short term for patients when the pt. was on multiple meds and at risk of interactions but the condition was not deemed urgent. All physicians had difficulty communicating with private practice psychologists and that these psychologists could benefit from a better understanding of the nature and treatment of their pt.’s chronic diseases. The main barriers were the lack of mental health services, the delay accessing specialized services, less than optimal collaboration and communication between professionals, and training needs. For patients it included the burden of care (multiple treatments, frequent consultations) which influenced readiness to access additional services. The health and social service center had long waiting lists, complex pathways, many clinicians and often unspecialized services.
Smith 2010 5 main themes:
1. Multimorbidity and the link to Polypharmacy and ageing. • Multimorbidity a common phenomenon associated mostly with older age. Polypharmacy commonly associated with it, but not being given attention to, and which may add to multimorbidity.
• Lack of distinction between multiple conditions and multiple risk factors was linked to the growth in preventive care; also clinical guidelines focused on single diseases which encouraged Polypharmacy.
2. Health system issues:
-Lack of time for managing complex patients; increased workload;
-Poor inter-professional communication, leading to fragmented care; between specialists, family physicians and pharmacists; latter felt isolated
3. Individual issues for clinicians: family physicians felt they were the coordinators of care; lacked clinical confidence dealing with complex issues; role of the practice nurse seemed unclear to them in managing MCC patients, since these were too complex for them to manage; making decisions in isolation from specialists; they regarded pharmacists having an important role, esp. for drug interactions;
-Pharmacists wanted to be involved but felt overloaded; observed that family physicians don’t review medicines; decision making was at the specialist level, where hospital pharmacists could be involved;
-Some suggested that specialists/hospitals were pushing their work on to primary care.
-Inconsistencies: related to keeping patients under family physicians care, while at the same time wanting access to specialist care.
-Clinical uncertainty related to stopping medications by both.
-Family physicians felt inadequately managing MMC due to lack of time, and expertise.
-Patient issues:
Burden of MCC on care givers and patients was acknowledged; with the health system complicating care and patients becoming depressed; cognitive impairment was also an issue; depression and loneliness further burdened caregivers; while some patients took active interest in their care, particularly managing medications.
-Potential solutions: Better models of care delivery, with more time for MCC; planning care better proactively; integrating rehabilitation programs; information sharing between providers; clear lines of responsibility.
  1. MCC Multiple chronic conditions