Collaborative care needs and preferences of primary care patients with multimorbidity

Abstract

Objective  To explore the collaborative care needs and preferences in primary care patients with multiple chronic illnesses.

Design  Focus groups utilizing a series of open‐ended questions elicited self‐identified problems, experiences in communicating with providers, self‐management needs, and preferences for monitoring and follow‐up. Responses were organized and interpreted in light of the essential elements of collaborative care for chronic illness.

Setting and Participants  Sixty patients having two or more chronic illnesses at eight geographically dispersed primary care clinics within the Veterans Health Administration in the United States.

Results  Identified problems included poor functioning, negative psychological reactions, negative effects on relationships and interference with work or leisure. Polypharmacy was a major concern. Problematic interactions with providers and the health care system were also mentioned, often in relation to specialty care and included incidents in which providers had ignored concerns or provided conflicting advice. Most participants, however, expressed overall satisfaction with their care and appreciation of their primary care physicians. Knowledge and skills deficits interfered with self‐management. Participants were willing to use technology for monitoring or educational purposes if it did not preclude human contact, and were receptive to non‐physician providers as long as they were used to augment, not eliminate, a physician's care.

Conclusions  Findings are consistent with the basic tenets of patient‐centred, collaborative care, and suggested that health care can be organized and delivered to meet the complex needs of patients with multimorbidity.

Introduction

As the average lifespan continues to increase in developed countries, the number of chronic medical conditions occurring in a given individual has also risen. While individual chronic illnesses are associated with poor health outcomes, persons with multiple chronic illnesses are at the highest risk of all for increased morbidity, mortality and health‐care utilization. ¹ , ² , ³ , ⁴ , ⁵ , ⁶ , ⁷ Issues of multimorbidity have often been overlooked, however, because the dominant model of medicine is much more adept at targeting individual chronic illnesses. Although health‐care systems have recognized and begun to address the special needs of outpatients with chronic disease through initiatives such as case‐manager programmes and clinical practice guidelines, most of these focus on individual chronic illnesses. Disease‐specific strategies may be effective for the single illnesses that they target, but can also result in fragmentation of care and are often unable to address the complex needs of patients with multimorbidity. ⁸ , ⁹ , ¹⁰ , ¹¹

The issues that patients, providers and systems face in managing multiple diseases in a single individual are not well known. Clues from a limited, but diverse set of studies suggest a range of management problems related to multimorbidity. These include polypharmacy and the risk of drug–drug interactions, ¹² clinical practice guidelines that are simply not relevant or applicable for ‘typical’ patients multimorbidity, ¹³ and conditions that are ignored or under‐treated given the ‘competing’ priorities of co‐existing diseases. ¹⁴ , ¹⁵ , ¹⁶ Other studies suggest that patients with multiple chronic illnesses experience a broad range of barriers to self‐care ¹⁷ and may be more likely to be perceived by providers as problem patients. ¹⁸

1n 1997, Von Korff et al. ¹⁹ wrote a landmark paper which argued for moving away from a disease‐specific model towards patient‐centred collaborative care, comprised of four essential components: (i) collaborative definition of problems, in which patient‐defined problems are identified along with medical problems diagnosed by physicians; (ii) targeting, goal setting, and planning, in which patients and providers focus on a specific problem, set realistic objectives, and develop an action plan in the context of patient preferences and readiness; (iii) a continuum of self‐management training and support services, in which patients have access to services that teach self‐management skills, guide health behaviour changes and provide emotional support; and (iv) active and sustained follow‐up, in which patients are contacted at specified intervals to monitor health status, identify potential complications and reinforce progress in implementing care plans. According to Von Korff, these four elements ‘make up a common core of services for chronic illness care that need not be reinvented for each disease’. ¹⁹

Although barriers to self care have been studied in patients with multiple chronic conditions, ¹⁷ patient perspectives on overall issues related to collaborative care for multiple chronic conditions have not been systematically studied. The objective of the current study was to explore, through focus groups, the problems that patients face in having multiple chronic illnesses, their experiences in communicating with their providers, their self‐management learning needs and their preferences for monitoring and follow‐up.

Settings and subjects

To obtain a range of patient experiences associated with the diversity of clinics within the Veterans Health Administration, purposive sampling was used to select eight primary care clinics in four geographical regions of the United States. ²⁰ The study sites were selected based on known regional variations in veterans’ functional status, ²¹ as well as differences in clinic size and organizational complexity. Four of the clinics were in large urban metropolitan settings while four were located in rural communities with populations of 60 000 or less. Four of the primary care clinics were based in tertiary care hospitals; while the other four were in free‐standing community‐based outpatient clinics.

Primary care physicians identified potential subjects with two or more chronic illnesses from lists generated by their clinics. Physicians were asked to exclude patients who had severe cognitive impairment or uncontrolled psychiatric illnesses. Nominated patients from each clinic were called until enough were scheduled for each focus group. Anticipating no shows, 8–12 patients were scheduled per group depending upon the size of the clinic and available conference room so as to achieve an average group size of 6–10 patients. ²² Of 78 scheduled patients, 60 (77%) attended the focus groups. Of these, 48 (80%) were men. The average number of participants per focus group was 7.5. The majority of participants were White people, but the groups also included African‐Americans and Hispanics. Patients ranged in age from their 30s to their 80s. The diversity reflected the overall veteran patient population and fostered lively interactions within groups. All subjects signed informed consents approved by the clinics’ Institutional Review Boards.

Focus group content

A semi‐structured interview guide was developed for the focus groups. ²⁰ A series of eight open‐ended questions elicited patient views on: (i) problems experienced in caring for their multiple chronic illnesses, (ii) experiences in setting priorities and communicating with their providers, (iii) self‐management learning needs and (iv) experiences and preferences for receiving follow‐up care. ¹⁹ Questions and probes focused on issues related to multiple chronic illnesses in general, as opposed to disease‐specific concerns. Patients were also asked general open‐ended questions to introduce the topic (What do you think of when you hear the phrase ‘chronic illness'?), and at the end to elicit additional material and allow the participants to reflect upon prior comments (‘Think about all we've talked about today – what kinds of ideas or suggestions do you have for improving your health care?’).

Data collection and analysis

The groups were held at the primary care clinics and lasted between 1.5 and 2 h. The interview guide was followed during each focus group, but discussions were allowed to move in unexpected directions if pertinent to the central research questions. Probes were used as needed to clarify responses or elicit additional material. ²² The co‐moderator took handwritten field notes during each focus group. The discussion was summarized for participants throughout and at the end of the focus groups in order to verify that the moderators’ understanding was accurate and the data complete. ²³

Following each focus group, the moderators debriefed to identify the most important points to emerge, unanticipated findings and questions that required modification in order to yield better quality data in subsequent groups. ²¹ In the manner of inductive research, this ongoing analysis allowed for deeper exploration of the research questions as the study progressed.

The focus groups were recorded with digital equipment. After verbatim transcriptions of the digital recordings were typed, one of the authors (PHN) carefully compared the transcripts with the recordings to ensure their accuracy. All personal and facility identifiers were removed. Copies of the corrected transcripts were distributed to the authors.

To analyse the data, investigators (PHN, BCF, ACL) first worked independently, carefully reading and rereading each of the focus group transcripts, attaching descriptive codes to segments of text. Descriptive codes were grouped to generate broader themes, and then patterns, interrelationships and overarching categories were discerned among the themes. ²⁴ Investigators discussed these via conference calls and e‐mail to reach consensus on emergent patterns within and across the collaborative care components and to agree upon additional overarching themes. A fourth investigator (JAP) reviewed the analysis, verifying findings through her experience as a primary care clinician.

Results

The following results are grouped according to the four components of Von Korff's collaborative management of chronic illness care, ¹⁹ following the focus group format. Other overarching themes that emerged from the data are presented at the end.

Patient‐identified problems

Participants identified a number of problems related to having or caring for multiple chronic illnesses. Six general categories emerged from the participants’ responses: (i) physical symptoms and effects on functioning; (ii) psychological reactions; (iii) effects on relationships; (iv) impact on work and leisure activities; (v) problems related to taking multiple medications; and (vi) problems in interacting with health‐care providers or the health‐care system.

Participants’ responses from the first four categories underscored the devastating impact their multiple illnesses had on their everyday lives. The most frequently mentioned physical effects were decreased mobility, physical limitations, pain, fatigue, dizziness, shortness of breath or dyspnoea, insomnia and sexual dysfunction. Psychological reactions included depression, anxiety, anger, irritability, resentment, loneliness and feelings of humiliation and inadequacy. In addition to bringing unwelcome changes to their lifestyle, many of the participants indicated that their illnesses interfered with their ability to participate in or enjoy social and leisure activities. Furthermore, several participants reported that their multiple illnesses had affected the quality of their job performance or required them to change jobs or retire early. Some attributed their financial problems to their multiple chronic illnesses. Others indicated that their illnesses had adversely affected their family relationships or led to the break‐up of their marriages. Many participants mentioned uncertainty about their prognosis and inability to plan for the future as a major source of concern.

Although several participants appeared overwhelmed by these problems and expressed feelings of hopelessness, many more seemed resilient and determined to persevere in spite of these challenges. A number of coping mechanisms were mentioned, including maintaining a sense of humour, relying on social support, staying active and taking responsibility for their care.

As noted above, focus group participants also reported a variety of problems related to polypharmacy. The burdens caused by medications were clearly a significant issue in the lives of these patients. The number of medications taken by these patients was remarkable; participants noted that they took as many as eight to 27 medications a day.

I take 11. I mean in the morning I'm swallowing a handful. I'm similar to an AIDS patient but I don't have AIDS, but I'm taking a handful. I've got two diabetes pills, I've got, let's see, a bunch of heart pills, you know…different ones that I'm taking….

I've got about seven different major illnesses. I take 27 pills a day. I find my whole day is full of nothing but medicine.

The sheer volume appeared to compound other problems related to medications, such as side effects and coordination of medications.

I said when I retired I wasn't going to have a schedule. And now I have to get up. I have to wake up at six‐thirty to take two pills …I can't eat until an hour later….

1st Patient: Some of my meds say I've got to take it a half hour before meals. Some say you take it at mealtime. Some say you take after mealtime. 
2nd Patient:… or don't take with a meal period! 
3rd Patient: We're a walking pharmacy!

That's the medication… you take medication and you take medications to counteract the medications. I take a handful of drugs every day and half of them are just to take care of the side effects of the other half.

Participants also identified a number of problems or ‘hassles’ in receiving care or in interacting with their provider or the health‐care system. The most frequently mentioned health‐care system ‘hassles’ included (i) long waits for referrals, (ii) poor continuity of care between clinics, (iii) problems in accessing non‐scheduled, urgent care, (iv) multiple appointments, and (v) problems communicating with their providers.

We sometimes have problems with…if you want to go see a specialist. I waited one time almost 4 months to get in to see the orthopedic doctor for back pain…and he just, I don't think he even looked at the x‐rays. He just prescribed a different medication than the one I was on and said ‘try this’.

Patient: I have experienced where, not your own doctor, but he sends you to some other…they'll attend to you and all that but it's sort of with the lack of enthusiasm or whatever. And I've had some cases where there is no follow‐up. They'll tell you ‘We'll call…’ or ‘We'll see you back in six months’ or whatever. 
Moderator: And then you never hear from them again? 
Patient: Right.

Most participants, however, were sympathetic and were more likely to blame the system, as opposed to individual providers, for access and continuity problems. Several participants indicated that their physicians were too busy, did not get enough support, or were responsible for caring for too many patients.

My biggest problem is not being able to get in when I want to. I mean I can get scheduled, that's fine. But last week I thought maybe there was a blood clot in my knee…But I live 300 miles away and to be told, ‘OK, well just come and sit and wait.’ Sorry… That's just not an option. But, the nurse looks at the doctor's schedule and it's kind of tough to say ‘Well, come on in’ when they're already seeing the doctor's got six patients too many.

I understand the time concern because when the doctor is seeing me…I don't want him to rush. I want him to take his time. And they have on your appointment slip, 30 minutes… 15 minutes… and that's how much time that doctor gets to spend with you…so he has a lot of patients to see, so I don't grumble so much about how long it's going to take me to get in just as long as I get in.

Participants also indicated that the amount of time allowed for the typical appointment was insufficient to address their multiple concerns. As one participants noted, there were ‘too many things to talk to the doctor about in such a short time and keep your mind in gear’.

Concerns also included frequent appointments that interfered with work or family life and the difficulty of juggling multiple appointments.

Scheduling is a problem. I have three appointments…usually takes 6 or 7 hours. The first thing is lab … and then I have an appointment either to x‐rays or the doctor. The last one is 2:30 in the afternoon. So you get here at 8:00 and you go to the lab and sit for an hour to the blood work and then you sit from then on until 2:00 to get in to see a doctor; those of us that don't live here close…it's a problem and I'm always exhausted. When I get home I've got to recover for 2 to 3 days.

You know there's a function that you'd like to attend or whatever that day you've got two appointments. You have to go to your appointments and you can't attend the event…

Patient: Yeah, I had three (appointments) in one day. 
Moderator: Oh, so what was that like for you? 
Patient: I didn't go to them. I didn't go to but one. I had one at 11:00 at the hospital. I had a 2:30 here (at the outpatient clinic). I had another one at 3:00 at the hospital. (Laughs) That's all in one day!

Communicating/prioritizing care with physicians

The majority of participants felt that their physicians were attentive and responsive to their concerns.

Dr X is a very, very good doctor. He's probably as good as you'd find….He explains things to you. Just before I leave he's saying ‘now do you understand? If you don't, ask me…’

He inspires in you a lot of confidence and he's a wonderful person. He treats you right…I can not only trust him, feel that, you know, because in my case sometimes he says, ‘Well I need to find out more about this. You need to go and see so and so.’ That tells me that he is not quite sure but he wants to be sure. He wants to find out.

Although most of the participants indicated that they and their PCPs shared the same concern about which illness or problem was the most important, several indicated that they and their doctors currently disagreed or had disagreed in the past about what problem or illness was most important.

I think my…physicians have more concerns about my mental health visits. I seem to think more about dealing with the pain and taking care of the issues that I guess haven't been addressed.

Well yeah, my primary doctor, team doctor I think is concerned about the diabetes that she found…but my major concern is … prostate problems. That's my biggest concern.

Some participants also reported feeling that their concerns were sometimes overlooked or ignored, especially by specialists. They were most likely to attribute this to understaffing or getting ‘lost in the shuffle’, but a few felt that their physicians lacked empathy, looked down on patients, or were too ready to ‘push’ pills without checking for underlying problems.

I had something. My leg was numb. I mean like a log… had no feeling at all. And I kept coming and telling the doctor, ‘My leg is numb. My leg is numb. My leg is numb.’ And he kept saying, ‘It's okay. It's okay. There's nothing wrong with it.’ And finally I said, ‘You have to do something about my leg because it's so cold.’ The whole thing was like freezing cold and I said ‘I'm afraid I'm going to lose it.’ And when I told him that, he felt it and said, ‘Oh, it is cold.’ And he sent me up to surgery but in the meantime it had been, hmmm… three months?

OK, if I went in with a headache, that would be all that he would look at, the headache. He wouldn't look at what made my head hurt in the first place. ‘Okay, you got a headache. Go take two Tylenol and call me back in the morning.’ Well, tell me why my head is hurting! Don't tell me to go and take two aspirin. I always want to know why something is going on. There's got to be a reason.

Well, I can't tolerate iron and sometimes iron – my doctors kept insisting that I take it and it caused my wrist, hand, and fingers to swell. It was painful, excruciating, but finally by switching types of iron he finally did find one that was good. But for months he would pay no attention to me when I'd tell that.’ This is what's doing it.’ And he'd say ‘No, it can't be, it don't make sense.’

Participants also reported past incidents in which two of their providers (e.g. PCP and specialist) disagreed with one another. Reported disagreements involved medications, diet recommendations, need for surgical procedures, diagnosis and post‐surgical instructions.

One thing for me is you talk to one doctor or healthcare provider or you talk to another one. One says you can eat this. One says you can't eat that. You know, one says you can. The other one says you can't! You can do this. You can't do that. You know, they don't seem to all work with the same information.

According to my primary doctor here, my left ventricle doesn't operate correctly, and yet I go to Dr. X for surgery, and I have to go to a stress test and they said there's nothing wrong with my heart. I don't know what to believe.

Strategies for dealing with these disagreements included: trying to get a third opinion, asking the two doctors to talk together (in the presence of the patient), consulting medical information on the Internet and trusting their own judgment.

Self‐management learning needs

Most participants were aware of a number of self‐management strategies recommended for chronic illnesses. These included following a healthy diet, exercising, losing weight, drinking more water, quitting smoking, monitoring physical symptoms, using relaxation exercises, keeping a positive attitude and staying busy. Many participants admitted that they did not always follow these recommendations, citing barriers such as fear, pain, lack of time and lack of motivation. Others indicated that their physicians’ self‐management or treatment recommendations were either unrealistic or impossible to achieve given their lifestyles.

When I was working, I traveled a lot and being on the road – diet, exercise, everything was gone. See if you're gone sometimes three weeks out of the month, you've blown it. And I don't think the medical advice or care we get takes into consideration some of the demands of the job that we do.

Some participants felt that they lacked the technical information or skills needed to do these things the ‘right way’. A few, however, were unaware that self‐management strategies were even available for things such as managing pain, improving sleep and managing stress. Of all self‐care strategies mentioned, patients indicated that they were most interested in learning to: manage their medications, cope with stress, exercise, manage pain, improve their sexual relationships, improve their diet and nutrition, better recognize important symptoms (e.g. cardiac), improve their sleep and meet their responsibilities at work and home.

Preferences for monitoring and follow‐up

Participants reported using a variety of modalities for being monitored or contacting their primary care providers between scheduled appointments. These included: use of urgent care or walk‐in clinics, group visits, automated telephone system, standard phone, e‐mail and fax. The majority, however, reported that they usually contacted a triage nurse or their primary care provider (either directly or through an intermediary such as a secretary or team member) by phone.

Yes, they have a phone. You know I forget what they call that number, that you can call and talk to a nurse and that nurse can help triage you as to whether you need to go to a hospital now, what you should do…which I think is pretty neat.

Although most participants indicated that using the telephone to contact their physicians usually worked well; a few expressed intense dislike of automated phone systems.

I don't like automated phone calls. I think the worst thing in the world is when they developed that. I mean you want to call somebody and find out about something and you spend an hour on the phone where you hit this number for that and you hit another number to get to the other…by the time you get done you've got an hour tied up and you still haven't reached what you want.

The majority of participants did not have access to a computer or had not used e‐mail to communicate with their health‐care providers. The few that did reported liking it very much. The availability of these different options varied across clinics, but several participants indicated that they would be willing to try strategies such as e‐mail or interactive web‐based programs if available. Participants also indicated that they were willing to use technology for monitoring or for educational purposes, as long as it did not preclude human contact.

You walk into their office and they give you a form to fill out and then sit you at a computer screen to so‐call take a computer‐aided instruction on how to operate the equipment. Where is the human interaction? No human interaction whatsoever.

Most participants also indicated that they were generally familiar with the roles and training of a variety of non‐physician health care professionals (e.g. pharmacists, dietitians, physical therapists, social workers). Availability of these non‐physician professionals varied greatly across the eight clinics. If followed by a non‐physician professional, participants indicated that they were most likely to receive care from a nurse practitioner. Participants were almost universally positive about nurse practitioners.

I have had marvelous experiences with my nurse practitioner. I was assigned a nurse practitioner … and I've kept her all during this time. And I found that, number one, she is a caring individual. If she tells me that she's going to call me back, she will. I've had her run out to catch me before I get out of the hospital like to tell me that I had diabetes and I needed to do something about it.

Only a few indicated having negative impressions of, or experiences with, non‐physician professionals. Most indicated that they would be willing to receive care from non‐physician providers, as long as these professionals were used to augment, not eliminate, a physician's care. Many participants appreciated the fact that non‐physicians could provide support that their physician had neither the time nor the training to do.

I like the pharmacists here. They will answer your questions…I find the pharmacists here are very informative. They'll sit you down. They'll explain it to you. They send home a sheet with you. They've got a computer out here. You punch in the drug you take and it prints out a sheet you can take home.

Most patients, however, indicated that they wanted their physicians to supervise, or least be aware of, the actions of the non‐physician professionals. Consistent with this theme, all patients whose health care was delivered by a primary care team consisting of a physician, nurse practitioner, and other health care providers were very positive about their experiences.

They mail you out a flyer ever so about 3 months and they remind you what team you're on… Then they get the doctor's contact person's name. So if you have a problem, you just call that contact person. They take care of everything for you. Yeah that's the best system. That and the nurse practitioner, and your regular doctor… and I've got a drug doctor too. What do you call it? He checks my drugs against other drugs? A pharmacist, yeah. And then he calls me up at home and lets me know what the different readings are. He calls you if your blood sugar level is wrong …he'll call and adjust your medication which is good. You've got all of that facility available inside the internal medicine right now, which I think works beautiful. It's just a fantastic medical team.

Overarching themes

Several overarching themes emerged from the focus groups. The most salient was the adverse impact of medications on the lives of these patients. Medication‐related problems were mentioned in regard to daily functioning as well as in their interactions with their providers and the health‐care system. Patients were resentful of their dependence on medications, the difficulty of their medication regimens, the resultant changes in their lifestyle, the adverse effects from the medications, their hassles in obtaining or changing their prescriptions, and the lack of information about their medications. Furthermore, medications were often mentioned as the focus of conflict with their physicians and other health‐care providers.

A number of other problems related to health‐care interactions included delayed access to specialty clinics and non‐urgent care, and difficulties in communicating with health‐care providers. In spite of these problems, most of the participants appeared satisfied with their overall health care and seemed especially appreciative of their primary care physicians. In spite of their obvious frustration with these health care hassles, many seemed understanding of system constraints. They were, however, more likely to express anger when describing interactions with individual providers who were dismissive of, or unresponsive to, their concerns. Most patients wanted to be active partners in their own care, but sometime had difficulty in making this happen, especially with specialists. Participants often expressed the need to be more knowledgeable, assertive and self‐reliant when interacting with their providers and health‐care system and frequently encouraged other participants to do the same.

Discussion

Focus groups revealed a number of important problems, needs and preferences for the 60 participating primary care patients, all of whom had two or more chronic illnesses. Problems included physical symptoms and their effects on functioning, psychological reactions, negative effects on relationships, and impact on work and leisure activities. Patients were more concerned about functioning and the ways that these illnesses interfere with their lives than symptoms per se. They also expressed many concerns about medications and problems interacting with their providers and the health‐care system. These health care ‘hassles’ clearly present major challenges for these patients. Although most conceptualizations of hassles or barriers to self‐care in disease‐specific research tend to focus on problems that occur outside the health‐care system, the responses of these patients clearly indicate that problems in interacting with the health‐care system and their providers were major concerns and obstacles to self care.

It is our impression that most of the identified problems were not unique to patients with multimorbidity. It is possible for patients with a single chronic illness to take more than one medication, experience side‐effects, have difficulty communicating with their provider, or experience poor continuity of care. Multimorbidity, however, seems to magnify these problems or increase the probability that such problems will occur. Whether these problems increase in an additive or exponential manner with each additional chronic illness remains unclear. The relative importance of these problems may also vary for different diseases ¹⁷ or for different clusters of diseases.

Although these problems were identified by patients served by a single health care system, the findings are consistent with those found in other settings. ²⁵ , ²⁶ Other findings, however, may have emerged if patients had been randomly selected or if patients had been nominated by specialists instead of primary care physicians. Future survey research comparing primary care patients who have specific clusters of multiple chronic illnesses and patients with single chronic illnesses will attempt to validate the themes identified in this qualitative study.

Nevertheless, qualitative methodology was ideal for initially identifying the range and breadth of problems, needs, and preferences of patients with multimorbidity. The concerns of these patients, expressed in their own words, powerfully convey the complex issues that confront these patients in their daily lives and in their dealings with their health‐care system. The findings suggest that reliance of health care on disease‐specific interventions, focus on symptoms instead of functioning, reliance on medications, and fragmentation of care often fail to address the needs of these complex patients and can create as many problems as they solve.

The participants’ self‐identified problems, needs and preferences for health care appeared consistent with the basic tenets of patient‐centred, collaborative care. ¹⁹ Experiences with providers and clinics that were more patient‐centred engendered greater satisfaction. For example, team care and other strategies that facilitated communication, access and continuity of care were greatly appreciated by these patients and suggest that health care can be organized and delivered to mitigate many of the identified health‐care system ‘hassles’. The experiences of these patients provide additional support for calls to re‐organize the delivery of health care ¹⁹ , ²⁵ , ²⁶ , ²⁷ and suggest that collaborative, patient‐centred services may be best able to meet the complex needs of patients with multimorbidity.