Pain in Homebound Older Adults with Heart Failure after Hospital Discharge

Abstract

Pain is not uncommon in older adult patients with heart failure (HF) and has been identified as a risk factor for rehospitalization of homebound patients with HF. Little is known about the pain experiences and management of older adults with HF after hospital discharge. We sought to describe pain and other symptoms among homebound older adults with HF using a qualitative and descriptive approach. We conducted semistructured interviews to obtain qualitative data and used the Brief Pain Instrument-Short Form and the Edmonton Symptom Assessment Scale to obtain descriptive data on symptom burden. We interviewed 18 participants within 10 days after hospital discharge. Participants’ mean age was 75.8 ± 9.0 years; 78% were White. The mean pain score at its worst was 5.2 ± 3.1, and for pain interfering with sleep was 4.3 ± 3.41. Most participants managed pain with medications. Using thematic analysis of qualitative data, we identified three distinct categories: (1) the diversity of patients’ pain experiences, (2) the diversity of pain management routines, and (3) patients’ experiences with healthcare providers’ pain assessment and management practices. Our findings show that homebound older adults with HF experience various pain symptoms and receive inconsistent education about how to manage pain from healthcare providers. This study supports the need for better pain assessment and education about the appropriate use of pain medications and nonpharmacologic approaches to pain control for homebound older adults with HF.

Graphical Abstract

Pain is one of the most common symptoms experienced by adults 65 years and older (Kang et al., 2017). However, pain is frequently underreported in this population for various reasons, including the fact that many older adults consider pain to be a natural consequence of aging (Kang & Demiris, 2018). Pain occurs commonly in patients with heart failure (HF), which is increasing in incidence in the aging population (Kang et al., 2017). Up to 85% of patients with HF across different clinical settings experience pain of various etiologies (Alemzadeh-Ansari et al., 2017; Alpert et al., 2017; Conley et al., 2019; Haedtke et al., 2017). Of particular concern is that older adults with HF tend to have decreased ability to recognize worsening symptoms, including pain (Delaney et al., 2011; Kang et al., 2017).

The physiologic response to pain is sympathetic nervous system activation (Udeoji et al., 2012). Chronic sympathetic activation results in increased cardiovascular workload and oxygen demand, sodium retention, and other detrimental effects in patients with chronic HF (Kang et al., 2017). Consequently, unresolved pain in older adults with HF may lead to worsening HF symptoms such as dyspnea, decreased functional ability, poor quality of life, sleeplessness, and disruption of self-management behaviors (Alemzadeh-Ansari et al., 2017; Alpert et al., 2017; Conley et al., 2019). Pain is also an important risk factor for rehospitalization among patients with HF who receive home healthcare services (Kang et al., 2017).

Nearly 30% of Medicare beneficiaries with HF receive home healthcare services following hospital discharge (Middleton et al., 2019). These services typically include intermittent skilled care from a nurse, physical therapist, occupational therapist, home health aide, social worker, or speech therapist (Kang et al., 2020; Wang et al., 2017). However, pain experiences and management practices among homebound older adults with HF after hospital discharge remain poorly understood. Accordingly, this study sought to describe experiences and management practices among homebound older adults with HF within 10 days of hospital discharge in order to identify potential ways to improve pain assessment and management practices in this population.

Methods

Research Design

We conducted semistructured interviews and used two quantitative instruments to assess participants’ symptom status. All study materials and activities were approved by the institutional review board of the first author’s institution.

Study Sample and Procedure

Participants included older adults (age ≥65) with HF residing in the greater Salt Lake City area and receiving home healthcare within 10 days of hospital discharge. We searched for potential participants using electronic health records to identify patients with HF admitted to a cardiac specialty floor at a tertiary hospital. Potential participants were approached in the hospital prior to discharge. The study team briefly explained the study and, if interested, potential participants received detailed explanation and written information on the study procedures. We obtained written informed consent in the hospital for those who agreed to participate.

Data Collection Procedure

A total of 18 participants were interviewed at home within 10 days of hospital discharge between October 2018 and March 2019. The interview questions (Table 1) were developed by members of the research team based on their collective experience providing home healthcare services to older adults. Study enrollment and data collection were completed when analysis of the qualitative interview data indicated saturation. Interview recordings were transcribed verbatim. Participants received a $20 gift card after completion of the interview.

Table 1.

Interview Questions

1.) Please tell me about your experience of pain.

2.) When you have pain, how would you describe it (e.g., throbbing, aching, or discomfort)?

3.) Do you feel any difference(s) in the pain experiences you have had before and after being diagnosed with heart failure?

4.) When do you feel worsening pain (e.g., with shortness of breath)?

5.) How are you asked about your pain by your healthcare providers?

6.) How do you typically manage your pain?

7.) Who do you to talk to about managing your pain?

8.) What kind of things (e.g., instructions on the use of medications) you need to help you manage your pain?

9.) Do you experience any other symptoms when you experience pain?

Instruments

In addition to obtaining qualitative statements about pain, we used two instruments to assess symptom prevalence and severity after hospital discharge—the Brief Pain Instrument-Short Form (BPI-SF) and the Edmonton Symptom Assessment Scale (ESAS). The BPI-SF focuses on assessing pain location(s) using an anatomic body diagram, pain severity, current pain medication(s), as well as level of both pain relief and pain interference experienced during the past 24 hours. The score of self-reported pain severity ranges from “0” (no pain) to “10” (pain as bad as you can imagine; Haedtke et al., 2017; McDonald et al., 2015). The BPI-SF is a validated multidimensional pain assessment tool for older adults with minimal cognitive impairment, and has been used to study pain in the HF population (Goodlin et al., 2012; Haedtke et al.; McDonald et al.). The ESAS is designed to evaluate nine different symptoms and their severity at the time of assessment: pain, tiredness, nausea, depression, anxiety, drowsiness, appetite, well-being, and shortness of breath; ESAS score ranges from 0 (no symptoms) to 10 (worst possible symptoms) for each item. The ESAS also has been used to measure symptoms in the HF population (Alpert et al., 2017; Udeoji et al., 2012).

Data Analysis

Interview transcripts were uploaded to a web-based qualitative analysis software program (Dedoose) to facilitate coding and categorization and organize analysis. The lead author (YK) and a research team member (YC) analyzed interview data using a thematic analysis approach: 1) pre-analysis of the interview transcriptions that were repeatedly read to enhance familiarity with data; 2) coding identification and development of a working codebook; 3) verification of the working codebook; 4) initial coding of transcripts by YK and YC independently; 5) a consensus process to apply codes and resolve uncertainties through discussion; 6) categorization of codes; and 7) identification of themes (Graneheim & Lundman, 2004). SPSS version 24 (Armonk, NY) was used for descriptive data analysis.

Results

Study Sample Characteristics

Participant mean age was 75.8 ± 9.0 years; 50% were female, 78% were White, and 50% completed some college. Sixty-seven percent of participants reported that they didn’t have informal/unpaid caregivers. The average length of hospital stay was 7.7 days (SD ± 6.4).

Pain and Symptom Assessments

Tabulated results of the BPI-SF assessment appear in Table 2. The mean score for pain at its worst was 5.2 ± 3.1 and pain interfering with sleep had the highest mean score (4.3 ± 3.4), followed by walking ability (4.1 ± 3.6). The locations of pain marked on the BPI-SF diagram varied considerably; the most common locations were back and lower extremities; nearly 70% of participants experienced pain in more than two locations. The majority of participants managed pain with medications. Medications used for pain included acetaminophen, opioids, nonsteroidal anti-inflammatory drugs (NSAIDs), and analgesics. Based on the ESAS (Table 3), tiredness (5.6 ± 3.0), appetite (4.0 ± 2.6), and feeling of well-being (3.4 ± 2.9) had the top three mean symptom severity scores, whereas nausea had the lowest mean severity score (0.8 ± 2.5).

Table 2.

Description of Pain: BPI-SF

Pain Intensity	Count (%), Mean (SD)
Pain other than everyday kinds of pain (i.e., headaches, sprains, and toothaches) today	No: 7 (39%)
	Yes: 11 (61%)
Pain in the last 24 hours (0–10)
at its worst	5.2 (3.08)
at its least	1.6 (2.00)
on the average	3.8 (2.36)
right now	2.3 (2.56)
Pain Relief (%)	46.3 (33.4)
Pain interference
General activity	4.0 (3.7)
Mood	2.9 (3.5)
Walking ability	4.1 (3.6)
Normal work	3.3 (3.1)
Relations with other people	2.3 (3.2)
Sleep	4.3 (3.4)
Enjoyment of life	2.9 (3.1)

Note. BPI-SF: Brief Pain Instrument-Short Form; SD: standard deviation.

Table 3.

Description of Symptoms: ESAS

Symptoms	Mean (SD)
Pain	3.1 (3.0)
Tiredness	5.6 (3.0)
Nausea	0.8 (2.5)
Depression	2.5 (3.6)
Anxiety	1.8 (2.3)
Drowsiness	3.0 (3.1)
Appetite	4.0 (2.6)
Feeling of well-being	3.4 (2.9)
Shortness of breath	2.4 (2.7)
Other problems	0.00 (0.0)

Note. ESAS: Edmonton Symptom Assessment Scale; SD: standard deviation.

Qualitative Results

Three major categories and corresponding themes emerged regarding patients’ pain experiences, pain management strategies, and their view of healthcare providers’ pain assessment and management practices. Table 4 outlines the identified themes within each category: 1) the diversity of patients’ pain experiences, 2) the diversity of patients’ pain management, and 3) patients’ experiences with healthcare providers’ pain assessment and management practices.

Table 4.

Themes within Each Category

Category	Theme
1. The diversity of patients’ pain experiences	Patients reported various pain experiences and did not report any typical types of pain. Some patients were having diffi culty of describing their pain symptoms.
2. The diversity of patients’ pain management routines	The common pain management method was using medications but some patients questioned the effectiveness of pain medications. Only a few patients used nonpharmacologic pain management such as heating pad or ice pad.
3. Patients’ experiences with healthcare providers' pain assessment and management practices	Patients reported inconsistency in pain assessment and management across different healthcare providers.

The Diversity of Patienťs Pain Experiences

Overall, participants’ pain experiences were diverse. Some patients manifested new pain symptoms and described that their pain experiences changed after the diagnosis of HF. On the other hand, other patients were not able to distinguish the differences, or reported no difference in their pain experience, since receiving an HF diagnosis. Some patients reported restrictions in activities of daily living due to known HF-related symptoms such as shortness of breath, dizziness and blurry vision, but not so much due to pain.

Some patients were able to characterize the circumstances when they experienced worsening pain and tried to manage or avoid such situations. For example, several participants mentioned that exertion or doing a strenuous activity was likely to cause worsening pain and took necessary precautions. However, some participants found it difficult to distinguish why their pain symptoms worsened from time to time.

“Um, exertion will cause some pain. But that’s usually back pain and pain on the ulcer on the end of the stump, but I know what to avoid.” (P9)

“It just comes and goes throughout the day. It does not matter what activity I am doing.” (P4)

One patient reported experiencing new pain symptoms as a consequence of medication use. This patient attributed her lower back pain to taking a specific type of diuretic.

“No, the only time I ever feel anything else, is on occasion when using heavy diuretics, I’ll have discomfort in the lower portion of the back on each side bilaterally. I don’t use it anymore, but it was consistent that every time I used it, there would be a heavy effect.” (P18)

The Diversity of Patients’ Pain Management Routines

Most patients reported using some form of medication to manage pain, both over-the-counter pain medications such as acetaminophen, and prescribed pain medications. The administration routine and the effectiveness of taking medication to relieve pain varied considerably from patient to patient. Generally, patients avoided using medication until the intensity of their pain symptoms became intolerable.

“Well, if I need a pain pill, I’ll take it, but if I don’t need it, I don’t take it.” (P5)

“Oh yeah and I [need] to be in a lot of pain for me to take a Tylenol, and that will usually be at bedtime.” (P15)

Some patients were uncertain about the effectiveness of their pain medication. A few patients described frustration stating that they stopped using analgesic medication despite continuing pain because the medication was ineffective. Those patients were reluctant to take medication for pain and described using other pain relief methods. The most commonly reported nonpharmacologic method was resting until the pain was relieved. Some mentioned using heat or an ice pad to control pain.

“Like I said, it’s almost unable to relieve this pain. The pain killers cannot even work, I’ve tried several medications and it just doesn’t work.” (P17)

“Yes, I usually lay down. Sometimes, my daughter gets me to use heat, which helps, but it’s kind of hot, so I resist sometimes.” (P8)

Patients' Experiences with Healthcare Providers' Pain Assessment and Management Practices

Most patients stated that clinicians used the numeric scale during the visit, but some mentioned the use of a smiley face chart and verbally describing their pain. One participant mentioned the difficulty of using a smiley face chart to describe pain intensity. Some patients reported frustration when healthcare providers did not acknowledge the severity of their pain and did not ask them about their pain during follow-up visits. For example, although one patient expressed satisfaction with her healthcare provider in managing her pain with medication, another participant expressed dissatisfaction and frustration when her pain medication prescription was discontinued.

“She [primary care doctor] doesn’t bother. She never asks me. [Other providers] just ask me how I’m doing, and if I have any pain and where it’s at. But she [primary care doctor] never does.” (P13)

“Yeah, she [PCP] is the one who helps me with that. She’ll tell me how much medicine I should take, how often I should take it, so she keeps track of me pretty well with that.” (P5)

“Well, it’s really frustrating. One of the things I was using was Celebrex but the cardiologist was really opposed to my continuing it because of the possible edema, which with fluid overload, is not a good thing. So, I’ve given that up but grudgingly because it so freezes up the joints, that you can do so much more without the pain.” (P18)

Some participants discussed the difficulty of having to deal with multiple healthcare providers and varying pain management regimen recommendations. A few patients reported seeking pain relief from the emergency department because it was too difficult to get an appointment with their providers when needed. Also, a few patients responded “No” to the questions about whether there was anyone else they needed help from to manage pain.

“In the past, I spoke to a number of physicians. One was the ophthalmologist and then the cardiologist and each was recommending certain pain meds, and I have everything funneled to my primary care, so that they send their consults to her and she manages everything that is happening. For example, the nephrologist wants minimal diuretics and the cardiologist wanted as much as he can get without damaging to the kidneys, so she tries to just to manage a balance between the two.” (P18)

“I have a family doctor through the VA, but she’s been really hard to get in to be seen so they said if anything worsens, to go to the ER.” (P10)

“She [healthcare provider] does not bother.” (P13)

Discussion

This study describes the pain experiences of homebound older adult patients with HF following hospital discharge. The qualitative data demonstrate that patients report experiencing various pain types with no consistent type of pain identified. The most common pain management method employed by participants was analgesic medication use, but some patients questioned their effectiveness. Finally, most patients stated there was inconsistency in pain assessment and management across healthcare providers.

Participants’ statements about pain experiences varied considerably: some participants stated that activity was associated with worsening pain symptoms, whereas others stated they experienced pain on and off without specific triggers. These results may indicate that some homebound older adult patients with HF have difficulty recognizing that symptoms are worsening. In the literature, older adults with HF experience more symptoms compared with younger adults and have difficulty with early recognition of worsening symptoms (Pirmohamed et al., 2016).

From exploring quantitative symptom status, the mean pain scores were comparable to another study, which reported a mean score of 3.6 using the ESAS in patients with HF who were considered to be hemodynamically stable (Shah et al., 2013). We found patients with HF still experienced mild-to-moderate pain after hospital discharge, and most patients had musculoskeletal pain. In this population, the origin of pain is due to mechanisms such as reduced functional ability from hospitalization. This aligns with the previous evidence (Bhattarai et al., 2016). Even though pain was not the most prominent symptom of patients enrolled in our study, pain should be considered as one of the HF hallmark symptoms to be assessed (Alemzadeh-Ansari et al., 2017; Udeoji et al., 2012). However, in the home healthcare electronic health records, the Outcome Assessment and Information Set (OASIS)-D version released in 2019, there is only one pain assessment question which asks about the frequency of pain interference. Our findings support the need for a more comprehensive pain symptom assessment for homebound older adults with HF.

We found most patients were assessed for the presence of pain using a numeric scale, with some assessed using a face scale. One patient explicitly stated she found it difficult to describe her level of pain intensity using a face scale. Although one review study stated a Faces Pain Scale was suitable for use in older adults in the home healthcare setting, multidimensional pain assessment tools may be more suitable in this population (Kang & Demiris, 2018). Serial use of multidimensional pain assessment tools such as the BPI-SF, ESAS, and the Memorial Symptom Assessment Scale for Heart Failure may be advantageous in the home healthcare setting.

In our study, the majority of patients used medications to manage pain, similar to an HF study by Haedtke et al. (2017) that found the majority of participants used medications to relieve pain, and only 5% used nonpharmacologic treatment. In our study, some patients reported the use of NSAIDs, even though they are contraindicated for patients with HF because of the adverse effects on sodium and fluid retention (Haedtke et al., 2017). Other studies have found between 9% and 14% of patients with HF took NSAIDs (Haedtke et al.; McDonald et al., 2015). In addition to NSAIDs, one patient in our study took Lyrica, which can cause edema similar to the side effect of Gabapentin (Freynhagen et al., 2015). A previous study reported nearly 10% of HF participants took Gabapentin that causes edema and volume overloaded (Goodlin et al., 2012). The use of opioids has been suggested for pain relief for chronic and advanced HF (Conley et al., 2015; Goodlin et al.). However, the substantial risks associated with opioids, such as functional impairment and decreased physical functioning, need to be considered.

We found nonpharmacologic methods to be underused. Some participants stated pain medications did not relieve their pain. Although some rested or used heat or ice, the majority of participants did not view physical therapy or cardiac rehabilitation as an approach that could help with pain. We speculate that some reasons for not using nonpharmacologic methods to treat pain could include physical limitations, frailty, or cognitive issues. One study showed the most frequently reported nonpharmacologic methods consisted of walking and application of heat, whereas none of the participants reported using massage, or yoga (McDonald et al., 2015). Thus, interventions using nonpharmacologic approaches such as physical therapy should be explored for their potential use in older adults with HF. Some have also suggested exploring behavioral interventions in place of pharmacologic approaches (Conley et al., 2015). Overall, our study demonstrated that homebound older adults with HF did not receive proper education on pain symptoms and management regimen despite receiving care from hospital and home healthcare services.

Results suggest that homebound older adults with HF are somewhat dissatisfied with their healthcare providers’ pain assessment and management practices due to the use of highly variable assessment and management methods as well as poor communication between healthcare providers. Even if patients are assessed by a healthcare provider, burdensome symptoms are not always identified (Alpert et al., 2017). Prior research has documented that homebound patients in general have high symptom burden, including pain, and nearly 70% report experiencing pain upon hospital discharge (Ornstein et al., 2013). Even though older patients with HF experienced pain during their hospitalization, they were discharged without a pain management regimen (Bhattarai et al., 2016). Based on our findings, we agree with suggestions from the literature that patients may benefit from structured pain management education and a clear pain management regimen prior to hospital discharge (Bhattarai et al.). Home healthcare clinicians should have access to patients’ established pain management plan to assist in treatment transitions and continuity of care.

Although preliminary, our findings support efforts to develop and evaluate comprehensive symptom assessment methods to include symptoms like pain in concert with symptom management interventions designed specifically for homebound older adults with HF. In order to develop such an intervention, future research is warranted to identify underlying causes and etiology of pain. Better understanding of how older adults with HF receiving home healthcare services experience pain relative to other factors could increase awareness of the potentially detrimental effects of pain on HF outcomes.

Limitations

All participants were identified at one hospital and were mostly White. We relied on patient report and did not have access to additional clinical data from the home healthcare agencies providing the services. Therefore, there is a risk for recall bias about patient’s pain experience and management practice. Sources of bias in coding or in interpreting the results could be based on coders’ experience and background. Lastly, our sample size is small, but discontinuation of recruitment was driven by achieving data saturation.

Conclusions

Our findings show that homebound older adults with HF experience various pain symptoms of considerable severity, and use analgesics as the primary pain management approach. Participants felt that education by healthcare providers about how to assess and manage pain is often inconsistent. This study supports the need for better pain assessment and education about the appropriate use of pain medications and nonpharmacologic approaches to pain control for homebound older adults with HF.