Abstract
Background:
Patients with peritoneal carcinomatosis (PC) frequently undergo palliative procedures, yet these patients and their caregivers report being unprepared to manage ostomies, drains, and other complex care needs at home. The purpose of this study was to characterize the unique needs of these patients and their caregivers during care transitions.
Methods:
Patients completed measures of health status and advance care planning, caregivers completed measures of preparedness and burden, and all participants completed measures of depression and anxiety. Participants detailed their experiences in individual, semi-structured interviews. We analyzed data using descriptive statistics and conventional content analysis.
Results:
Sixty-one patients and 39 caregivers completed baseline measures. Twenty-four (39.3%) patients acknowledged their terminal illness and seven (11.5%) had discussed end-of-life care preferences with clinicians. Most (26/39, 66.7%) caregivers provided daily care. Among caregivers who managed symptoms, few were taught how to do so (6/20, 30%). Seven patients (11.5%) and seven caregivers (17.9%) met case criteria for anxiety, while 15 patients (24.6%) and two caregivers (5.1%) met case criteria for depression. Interview participants described a diagnosis of PC as a turning point for which there is no road map and identified the need for health systems change to minimize suffering.
Conclusion:
Patients with PC and their caregivers are highly burdened by symptoms and care needs. Patients’ prognostic understanding and advance care planning are suboptimal. Interventions that train patients with PC and their caregivers to perform clinical care tasks, facilitate serious illness conversations, and provide psychosocial support are needed.
BACKGROUND
Peritoneal carcinomatosis (PC) is a frequent cause of suffering in patients with advanced gynecologic and gastrointestinal cancers [1]. PC occurs when tumor cells adhere to the peritoneal surfaces. When PC progresses, it may occlude the bowel or ureters, infiltrate the lymphatics, and/or increase intraperitoneal fluid accumulation [2]. Patients with PC often experience recurrent ascites or obstructive symptoms such as nausea, vomiting, pain, and obstipation. Effective symptom management frequently requires invasive palliative procedures such as bowel resections, ostomy formations, or placement of drainage catheters. Although these procedures can improve symptoms [3], they typically require patients or family caregivers to perform complex care tasks at home. Adapting to these complex needs may be difficult for patients with PC, many of whom face a high likelihood of re-obstruction, progression of other debilitating symptoms, and a prognosis of weeks to months to live [4,5].
Several studies have assessed patients’ physical well-being following palliative procedures [4–6]. Notably, one pragmatic comparative effectiveness study [6] randomly assigned patients with malignant bowel obstructions to surgical vs. non-surgical management; patients who declined randomization were enrolled in a prospective observational study to compare outcomes based upon patients’ choices. After adjustment for potential confounders, patients who received surgical procedures had improved nausea, vomiting, and abdominal pain compared with those who had non-surgical management, but there were no significant differences in median overall survival or days at home.
Few studies have assessed the lived experiences and health-related quality of life (HRQoL) of patients with PC-related complex care needs and their family caregivers. In one study of 63 patients with gastric cancer-associated PC, patients’ symptoms improved after bowel resection or ostomy, but their HRQoL did not [7]. Moreover, in a 2022 systematic review of studies describing patients’ lived experiences with malignant bowel obstructions, the authors concluded that patients’ and family caregivers’ experiences are underrepresented in the literature [8].
The absence of data describing patients’ and families’ experiences adapting to patients’ complex care needs limits clinicians’ ability to help patients make informed decisions about a palliative procedure. Likewise, few interventions have been developed to meet the needs of patients with PC and their family caregivers after such procedures [9]. Supportive care interventions have the potential to improve HRQoL [10] and survival [11] in patients with advanced cancer, yet interventions must address a well-characterized clinical problem [12]. Accordingly, the purpose of this study was to characterize the health status, cancer care experiences, and supportive care needs of patients with PC-related complex care needs and their family caregivers.
METHODS
Study Design
We conducted a pilot randomized controlled trial (NCT03367247; PI: Wright) of the Building Out Lifelines for Safety, Trust, Empowerment, and Renewal (BOLSTER) intervention [9]. BOLSTER is a four-week, nurse-led telehealth intervention designed to support patients with PC-related complex care needs and their family caregivers after an acute hospitalization. For the present study, we analyzed data from patient and caregiver baseline assessments. In addition, we analyzed qualitative data related to patients’ and caregivers’ experiences with PC. Qualitative data were collected during optional debriefing interviews with participants who completed either the present study or a pre-pilot study of BOLSTER, the details of which have been previously reported [9].
Participants and Setting
Eligible participants included English-speaking adults. Patients were eligible if they were hospitalized with gynecologic or gastrointestinal cancer-associated PC, had a new complex care need (defined as an ostomy; percutaneous nephrostomy, PleurX catheter, indwelling drain, or venting gastric tube; or feeding tubes and total parenteral nutrition), and had completed fewer than two outpatient visits after hospital discharge. Patients were excluded if discharged to a rehabilitation facility or hospice. Patients were asked to identify a caregiver at the time of enrollment; however, caregivers were not required to enroll. We identified patients with an automated electronic health record dashboard we developed for the study. We consulted with the patient’s primary oncologist prior to approaching patients in the hospital, in the outpatient oncology clinic, or via telephone. Study procedures were approved by the Dana-Farber Cancer Institute Institutional Review Board.
Data Collection
Participants completed baseline assessments prior to randomization. Participants completed assessments on paper, online via REDCap, or verbally with a research assistant. Participants self-reported their age, gender, race, ethnicity, relationship status, educational attainment, and employment status. Caregivers self-reported their relationship to the patient, caregiver role, time spent caregiving, caregiving activities, and training received for caregiving. We extracted information related to patients’ diagnoses, treatments, and complex care needs from the electronic health record.
We conducted individual, semi-structured interviews over the telephone approximately four to six weeks after enrollment. We developed the semi-structured interview guide to elicit information about participants’ experiences transitioning home after the patient’s hospitalization. The opening question was “please tell me what it was like for you to adapt to [your complex care need] when you came home from the hospital.” Prompts included “what, if any, challenges did you face?” and “to what extent do you feel comfortable managing your [complex care need] now?” Follow-up questions related to the participant’s past experiences during hospitalizations for PC; their role in meeting their / the patient’s complex care need(s); and their expectations, needs, and concerns. Participants who were randomized to the intervention arm were invited to provide feedback on BOLSTER; these responses were not analyzed as part of the current study and will be reported in a subsequent manuscript. Interviews were conducted by two trained research assistants (ET, AT) and one nurse scientist (RAP). Interviews were audio recorded, de-identified, and professionally transcribed.
Patient Measures
The EQ-5D-5L is a five-item measure of health status that evaluates perceived problems with mobility, self-care, usual activities, pain/discomfort, and anxiety/depression [13]. Problems in each domain are rated from 1-5; higher scores represent more severe problems. The EQ-5D-5L includes a visual analogue scale (EQ-VAS) on which patients rate their overall health. Possible EQ-VAS scores range from 0 to 100; higher scores represent better health status.
The Patient-Reported Outcomes Measurement Information System (PROMIS) Global Health measure consists of 10 items that assess physical and mental health [14]. PROMIS Global Health Scores are standardized to allow comparison to a United States general population mean of 50 with a standard deviation of 10. Scores range from 0 to 100; higher scores indicate better health.
The PROMIS Self-Efficacy short forms assess general self-efficacy, self-efficacy for managing medications and treatments, and self-efficacy for managing symptoms [15]. Scores on each four-item measure range from 0 to 100; higher scores indicate greater self-efficacy.
The Functional Assessment of Cancer Therapy-General (FACT-G) measures health-related quality of life (HRQoL) [16]. The FACT-G comprises 27 items across four subscales: physical well-being, emotional well-being, social and family well-being, and functional well-being. Total scores range from 0 to 108, with subscales ranging from 0 to 24 or 0 to 28; higher scores indicate better HRQoL. The mean and 25th percentile FACT-G scores in a population of adults with cancer were 80.9 (SD = 17.0) and 70, respectively [17].
Advance care planning and care experiences were assessed using several items adapted from prior studies. We assessed terminal illness acknowledgment by asking patients “How would you describe your current health status?” Response options included “relatively healthy,” “relatively healthy and terminally ill,” “seriously ill but not terminally ill,” and “seriously and terminally ill.” We considered responses of “seriously and terminally ill” or “relatively healthy and terminally ill” to acknowledge terminal illness [18]. We assessed treatment preferences by asking patients “if you could choose, would you prefer (1) a course of treatment that focused on extending life as much as possible, even if it meant more pain and discomfort, or (2) on a plan of care that focused on relieving pain and discomfort as much as possible, even if that meant not living as long?” [19]. Finally, patients were asked if they had completed a do-not-resuscitate (DNR) order and if they and their doctor had ever discussed the care they would want to receive if they were dying [20].
Patient and Caregiver Measures
The Hospital Anxiety and Depression Scale (HADS) comprises two seven-item subscales, assessing symptoms of anxiety and depression [21]. Scores range from 0-21 for each subscale, with higher scores indicating greater symptom burden. We defined a borderline case as a score of 8-10 and a case as a score >10 on either subscale [21.
The Brief COPE is a 28-item scale that assesses participants’ use of 14 coping strategies [22]. Total scores for each strategy range from 2 to 8; higher scores indicate more frequent use of each strategy. Consistent with prior research [23], we used an abbreviated version of the Brief COPE to assess participants’ use of three strategies associated with adjustment to cancer: active coping, emotional support, and behavioral disengagement coping strategies. Behavioral disengagement is an avoidant coping strategy that entails reducing one’s effort to cope. While behavioral disengagement may be maladaptive, it may also serve as a psychological defense against difficult situations beyond one’s control [23]. To identify participants with relatively high and low use of each coping strategy, we calculated the median score for each strategy. For active coping and emotional support, we designated participants scoring at or above the median as “high” and those scoring below the median as “low.” Given the relative infrequency of behavioral disengagement coping, we designated participants who endorsed any degree of behavioral disengagement as “high.”
The modified Medical Outcomes Social Support Survey (MOS) is an eight-item measure of social support [24]. The modified MOS assesses total social support, instrumental support, and emotional support. Scores for the total scale and subscales range from 1-5; higher scores indicate greater social support.
Caregiver Measures
The Caregiver Reaction Assessment (CRA) is a 24-item measure of the impact of caregiving on a person’s self-esteem, finances, family support, and schedule [25]. Totals for each of these four subscales range from 1-5. Higher scores indicate a more positive impact on self-esteem and a more negative impact on finances, family support, and schedule.
The Short Form 12-Item Survey (SF-12) is a measure of physical and mental health [26]. Mental and physical functioning summary scores range from 0 to 100; higher scores indicate better functioning. The population mean summary score in each domain is approximately 50 (approximate SD = 9.5).
The Caregiver Preparedness Scale measures how confident the caregiver is he or she can meet the patient’s needs [27]. We adopted the approach used in the Cancer Care Outcomes Research and Surveillance Consortium Share Thoughts on Care Survey [28] and administered the first four items of the scale. Response options range from 0 (“not at all confident”) to 4 (“extremely confident”); higher scores represent greater confidence.
Analysis
We calculated descriptive statistics and frequency distributions for patient and caregiver characteristics and baseline measures. We scored each PROMIS measure using the HealthMeasures Scoring Service [29]. All other quantitative data were analyzed using IBM SPSS 28.
When all debriefing interviews were complete, we analyzed transcripts using conventional content analysis [30]. Four members of the study team (RAP, JAW, AT, AAW) developed an initial codebook by analyzing one patient’s and one caregiver’s transcript together during a meeting. The remaining transcripts were analyzed independently by one of three study team members (RAP, JAW, AT). New codes were highlighted and discussed during meetings, during which the codebook was refined and expanded. After the initial round of coding, we organized codes into categories and summarized them. Finally, during a meeting with the principal investigator (AAW), we reviewed the summaries and identified several overarching themes.
RESULTS
Participant Characteristics
Sixty-one patients and 39 caregivers completed baseline assessments. Participant demographic and clinical characteristics are detailed in Table 1. Briefly, patients were 61.1 (SD = 8.8) years old on average and were predominantly female (56/61, 91.8%), married (48/61, 78.7%), White (50/61, 82.0%), non-Hispanic (54/61, 88.5%) college graduates (50/61, 82%). Most patients (40/61, 65.6%) were diagnosed with ovarian, fallopian tube, or primary peritoneal cancer. The most common complex care needs were total parenteral nutrition (TPN; 20/61, 32.8%) and ostomies (19/61, 31.1%). Patients were diagnosed a median of 13.0 (IQR 3.0, 33.5) months prior to enrollment. Caregivers were 59.9 (SD = 9.8) years old on average and were predominantly male (24/39, 61.5%), White (34/39, 87.2%), non-Hispanic (37/39, 94.9%) college graduates (29/40, 72.5%).
Table 1.
Participant Demographic and Clinical Characteristics
| Characteristics | Patients (n = 61) | Caregivers (n = 39) |
|---|---|---|
| Age, years, mean (SD) | 61.1 (8.8) | 59.9 (9.8) |
| Sex, N (%) | ||
| Female | 56 (91.8) | 14 (35.9) |
| Male | 5 (8.2) | 24 (61.5) |
| Not reported | 0 (0.0) | 1 (2.6) |
| Race, N (%) | ||
| White | 50 (82.0) | 34 (87.2) |
| Black or African American | 3 (4.9) | 2 (5.1) |
| Asian | 2 (3.3) | 1 (2.6) |
| Other | 5 (8.2) | 1 (2.6) |
| Not reported | 1 (1.6) | 1 (2.6) |
| Ethnicity, N (%) | ||
| Hispanic or Latinx | 3 (4.9) | 1 (2.6) |
| Not Hispanic or Latinx | 54 (88.5) | 37 (94.9) |
| Not reported | 4 (6.6) | 1 (2.6) |
| Education, N (%) | ||
| Advanced degree | 28 (45.9) | 18 (46.2) |
| College graduate | 22 (36.1) | 11 (28.2) |
| Some college or technical school | 4 (6.6) | 7 (17.9) |
| High school or less | 5 (8.2) | 3 (7.7) |
| Not reported | 2 (3.3) | 0 (0.0) |
| Relationship status, N (%) | ||
| Married or partnered | 50 (82.0) | 36 (92.3) |
| Divorced | 4 (6.6) | 2 (5.1) |
| Single, never married, or widowed | 5 (8.2) | 0 (0.0) |
| Not reported | 2 (3.3) | 1 (2.6) |
| Employment status, N (%) | ||
| Full or part-time work | 17 (27.9) | 23 (59.0) |
| Retired | 24 (39.3) | 12 (30.8) |
| Disabled | 9 (14.8) | 0 (0.0) |
| Unemployed | 4 (6.6) | 3 (7.7) |
| Other | 6 (9.8) | 1 (2.6) |
| Not reported | 1 (1.6) | 0 (0.0) |
| Clinical characteristics | ||
| Cancer diagnosis | ||
| Ovarian / fallopian tube / peritoneal | 42 (68.8) | |
| Endometrial | 7 (11.5) | |
| Cervical | 3 (4.9) | |
| Colorectal | 3 (4.9) | |
| Esophageal | 3 (4.9) | |
| Pancreatic | 3 (4.9) | |
| Recurrence status at enrollment | ||
| Newly diagnosed, on first-line therapy | 24 (39.3) | |
| Recurrent disease | 28 (45.9) | |
| Progression on first-line therapy | 9 (14.8) | |
| Complex care needa | ||
| Total parenteral nutrition | 20 (32.8) | |
| Colostomy or ileostomy | 19 (31.1) | |
| Percutaneous nephrostomy | 9 (14.8) | |
| Venting gastric tube | 6 (9.8) | |
| PleurX catheter | 5 (8.2) | |
| Jejunostomy feeding tube | 3 (4.9) | |
| Indwelling drain | 3 (4.9) | |
| Urostomy | 2 (3.3) | |
| Vacuum-assisted closure of wound | 1 (1.6) |
Seven patients (11.5%) had two complex care needs. Three (4.9%) had total parenteral nutrition (TPN) and a venting gastric tube, while one (1.6%) each had TPN and a colostomy, TPN and an abdominal drain, a PleurX catheter and ileostomy, and a percutaneous nephrostomy tube and venting gastric tube.
Patient Health Status and Quality of Life
Measures of patients’ health status and care preferences are displayed in Table 2. More than two-thirds of patients reported problems with mobility (42/61, 68.9%), self-care (42/61, 68.9%), usual activities (55/61, 90.2%), pain or discomfort (54/61, 88.5%), and anxiety or depression (50/61, 82%). Patients’ mean PROMIS Global Health scores were below the general population mean of 50 for physical (M = 36.9, SD = 6.9) and mental (M = 43.0, SD = 10.0) health [14]. Patients’ self-efficacy for managing medications and treatments (M = 46.3, SD = 8.5) was below the population mean, and similar to that for managing symptoms (M = 46.1, SD = 8.1). Patients’ mean FACT-G score was 63.9 (SD = 12.9), well below the 25th percentile score among patients with cancer [17].
Table 2.
Patient Health Status, Quality of Life, and Care Preferences
| Measure | Patients (n = 61) |
|---|---|
| EQ-5D-5L Mobility, N (%) | |
| I have no problems in walking about | 19 (31.1) |
| I have slight problems in walking about | 25 (41.0) |
| I have moderate problems in walking about | 10 (16.4) |
| I have severe problems in walking about | 6 (9.8) |
| I am unable to walk about | 1 (1.6) |
| EQ-5D-5L Self-Care, N (%) | |
| I have no problems washing or dressing myself | 19 (31.1) |
| I have slight problems washing or dressing myself | 27 (44.3) |
| I have moderate problems washing or dressing myself | 10 (16.4) |
| I have severe problems washing or dressing myself | 4 (6.6) |
| I am unable to wash or dress myself | 1 (1.6) |
| EQ-5D-5L Usual Activities, N (%) | |
| I have no problems doing my usual activities | 4 (6.6) |
| I have slight problems doing my usual activities | 16 (26.2) |
| I have moderate problems doing my usual activities | 20 (32.8) |
| I have severe problems doing my usual activities | 9 (14.8) |
| I am unable to do my usual activities | 10 (16.4) |
| Missing | 2 (3.3) |
| EQ-5D-5L Pain / Discomfort, N (%) | |
| I have no pain or discomfort | 6 (9.8) |
| I have slight pain or discomfort | 21 (34.4) |
| I have moderate pain or discomfort | 27 (44.3) |
| I have severe pain or discomfort | 5 (8.2) |
| I have extreme pain or discomfort | 1 (1.6) |
| Missing | 1 (1.6) |
| EQ-5D-5L Anxiety / Depression, N (%) | |
| Not anxious or depressed | 11 (18.0) |
| Slightly anxious or depressed | 33 (54.1) |
| Moderately anxious or depressed | 15 (24.6) |
| Severely anxious or depressed | 2 (3.3) |
| EQ-5D-5L Index Value, mean (SD), [range: 0-100] 1 | 49.7 (23.8) |
| PROMIS Measure, T-score, mean (SD), [range: 0-100] 2 | |
| Global Physical Health | 36.9 (6.9) |
| Global Mental Health | 43.0 (10.0) |
| General Self-Efficacy | 48.5 (11.0) |
| Self-Efficacy for Managing Medication and Treatments | 46.3 (8.5) |
| Self-Efficacy for Managing Symptoms | 46.1 (8.1) |
| FACT-G, mean (SD) 3 | |
| Overall quality of life [0-108] | 63.9 (12.9) |
| Physical well-being [0-28] | 12.8 (5.7) |
| Social and family well-being [0-28] | 24.6 (3.4) |
| Emotional well-being [0-24] | 15.2 (5.0) |
| Functional well-being [0-28] | 11.0 (5.0) |
The EQ-5D-5L Index Value, scored 0-100, reflects perceived health status, where higher values indicate better perceived health. The estimated U.S. population mean is 79.8 (SD = 16.4) [42].
PROMIS measures, scored 0-100, assessed physical and mental health as well as self-efficacy, where higher scores indicate better health or increased self-efficacy. The estimated U.S. population mean for these measures is 50 (SD = 10) [14, 15].
FACT-G measures health-related quality of life (HRQoL), where higher sores indicate better HRQoL. The estimated U.S. population mean for overall quality of life among adults with cancer is 80.9 (SD = 17.0) [17].
Caregiving Role, Tasks, Burden, and Health Status
Measures of caregivers’ role, caregiving burden, and health status are displayed in Table 3. Most caregivers were spouses or partners (29/39, 74.4%) who identified as primary caregivers (31/39, 79.4%). Most (26/39, 66.7%) provided care seven days a week, while nearly half helped the patient during the night (19/39, 48.7%) and needed to be available 24 hours a day (18/39, 46.2%). Caregivers often assisted patients with symptom management (20/39, 51.3%); caring for a catheter, drain, or colostomy (10/39, 25.6%); and changing bandages (7/39, 17.9%). Among the caregivers who performed these tasks, some reported being taught by health care professionals how to manage symptoms (6/20, 30.0%); care for a catheter, drain, or colostomy (6/10, 60.0%); or change bandages (2/7, 28.6%). Caregivers’ mean preparedness score was 2.4 (SD = 0.8) of a possible 4. Caregivers were most highly burdened by the impact of caregiving on their schedules (M = 3.3, SD = 0.8). Caregivers’ mean SF-12 scores indicated better physical health (M = 53.5, SD = 7.2) but worse mental health (M = 43.6, SD = 11.6) than the general population [26].
Table 3.
Caregiver Role, Tasks, Burden, and Health Status
| Characteristic | Caregivers (n = 39) |
|---|---|
| Relationship to patient, N (%) | |
| Spouse or partner | 28 (71.2) |
| Child | 5 (12.8) |
| Parent | 2 (5.1) |
| Friend | 2 (5.1) |
| Sibling or sibling-in-law | 2 (5.1) |
| Caregiver role, N (%) | |
| Primary caregiver (≥50% of care) | 31 (79.4) |
| Secondary caregiver (<50% of care) | 7 (17.9) |
| Missing | 1 (2.6) |
| Time spent caregiving, N (%) | |
| Provide care 7 days / week | 26 (66.7) |
| Need to be available 24 hours a day | 18 (46.2) |
| Need to help patient during the night | 19 (48.7) |
| Provide ≥3 hours of care / day | 16 (41.0) |
| Type of caregiving provided, N (%) | |
| ≥1 activity of daily living | 18 (46.2) |
| ≥1 instrumental activity of daily living | 33 (84.6) |
| ≥1 skilled care task | 24 (61.5) |
| Received training (among those performing), N (%) | |
| Symptom management (20 performing) | 6 (30.0) |
| Care of tubes / lines / drains (10 performing) | 6 (60.0) |
| Bandaging (7 performing) | 2 (28.6) |
| TPN (1 performing) | 0 (0.0) |
| Caregiver burden, mean (SD), [range 1-5] 1 | |
| Impact on self-esteem | 4.3 (0.4) |
| Impact on schedule | 3.3 (0.8) |
| Impact on finances | 2.3 (1.1) |
| Impact on health | 2.0 (0.7) |
| Lack of family support | 1.8 (0.7) |
| Caregiver preparedness, mean (SD) [range: 0-4] 2 | 2.4 (0.8) |
| SF-12, mean (SD), [range: 0-100] 3 | |
| Physical health | 53.5 (7.2) |
| Mental health | 43.6 (11.6) |
Caregiver Reaction Assessment, where higher scores indicate more positive impact on self-esteem and a more negative impact on schedule, finances, health and support.
Caregiver Preparedness Scale, where higher scores indicate greater preparedness.
Short Form 12-item Survey, where higher scores indicate better functioning.
Psychological Distress, Coping, and Social Support
Measures of patients’ and caregivers’ psychological distress and social support are displayed in Table 4. Seven patients (11.5%) and seven caregivers (17.9%) met case criteria for anxiety, while 15 patients (24.6%) and six caregivers (15.4%) met borderline case criteria. Nearly one-quarter of patients (15/61, 24.6%) and two caregivers (5.1%) met case criteria for depression, while an additional 15 patients (24.6%) and six caregivers (15.4%) met borderline case criteria. In patients, the median scores for active coping and emotional support were 7 and 8, respectively. As such, 35 (57.4%) patients had relatively high active coping and 33 (54.1%) had relatively high emotional support scores. Sixteen (26.2%) patients endorsed behavioral disengagement. In caregivers, the median score for active coping and emotional support was 6. As such, 19 (48.7%) had relatively high active coping and 20 (51.3%) had relatively high emotional support scores. Seven (17.9%) caregivers endorsed behavioral disengagement. Social support was higher for patients (M = 4.6, SD = 0.7) than for caregivers (M = 3.5, SD = 1.1).
Table 4.
Patient and Caregiver Distress and Social Support
| Measure | Patients (n = 61) | Caregivers (n = 39) |
|---|---|---|
| HADS Anxiety, N (%) | ||
| Case | 7 (11.5) | 7 (17.9) |
| Borderline case | 15 (24.6) | 6 (15.4) |
| Non-case | 36 (59.0) | 26 (66.7) |
| Missing | 3 (4.9) | 0 (0.0) |
| HADS Depression, N (%) | ||
| Case | 15 (24.6) | 2 (5.1) |
| Borderline case | 15 (24.6) | 6 (15.4) |
| Non-case | 29 (47.5) | 31 (79.5) |
| Missing | 2 (3.3) | 0 (0.0) |
| Social support, mean (SD), [range: 1-5] 1 | ||
| Overall social support | 4.6 (0.7) | 3.5 (1.1) |
| Instrumental support | 4.6 (0.8) | 3.4 (1.3) |
| Emotional support | 4.6 (0.7) | 3.6 (1.0) |
Assessed with the Medical Outcomes Study Social Support Survey, where higher scores indicate greater support.
Advance Care Planning and Care Experiences
As shown in Table 5, 24 of 61 patients (39.3%) acknowledged they were terminally ill. Slightly more patients preferred a course of treatment that would extend life (20/61, 32.8%) over one that would focus on comfort (19/61, 31.1%), while seventeen (27.9%) reported “I don’t know.” Among this sample, only seven (11.5%) had discussed with their clinical team the type of care they would want to receive if they were dying, and 18 of 61 (29.5%) had completed a DNR order.
Table 5.
Advance Care Planning and Care Experiences
| Item | Patients (n = 61) | |
|---|---|---|
| Acknowledgment of terminal illness | n | % |
| Did not acknowledge terminal illness | 29 | 47.5 |
| Acknowledged terminal illness | 24 | 39.3 |
| I don’t know | 4 | 6.6 |
| Refuse to answer | 2 | 3.3 |
| Missing | 2 | 3.3 |
| If you could choose, would you prefer: | ||
| A course of treatment that focused on extending life as much as possible, even if it meant more pain and discomfort | 20 | 32.8 |
| A plan of care that focused on relieving pain and discomfort as much as possible, even if that meant not living as long | 19 | 31.1 |
| I don’t know | 17 | 27.9 |
| Refuse to answer | 4 | 6.6 |
| Missing | 1 | 1.6 |
| Have you completed a do-not-resuscitate (DNR) order? | ||
| Yes | 18 | 30 |
| No | 32 | 53.3 |
| I don’t know | 7 | 11.7 |
| Refuse to answer | 3 | 4.9 |
| Missing | 1 | 1.6 |
| Have you and your doctor discussed any particular wishes you have about the care you would want to receive if you were dying? | ||
| Yes | 7 | 11.5 |
| No | 50 | 82 |
| Refuse to answer | 3 | 4.9 |
| Missing | 1 | 1.6 |
Interview findings
We interviewed a total of 22 patients, 19 of whom were participants in the current study and three of whom participated in the pre-pilot [9]. In addition, we interviewed seven caregivers, six of whom were participants in the current study and one of whom participated in the pre-pilot. Interviews ranged from approximately 30-60 minutes. We identified five themes related to the experiences of patients with PC and their caregivers. Themes are summarized below and exemplary quotes are provided in Table 6.
Table 6.
Exemplary quotes
| Reaching a turning point |
| “I think the surgical stuff with the kidney, really – I hadn’t seen that kind of fear in her – and that’s…what was hard.” Spousal caregiver of 67F with endometrial cancer and percutaneous nephrostomy |
| “I would like to just concentrate on being sane and not falling into a bad depression or being so anxious. It is very hard when all of these things are going on at the same time.” 39F with ovarian cancer and colostomy |
| “She went from survival mode, ‘I’m going to do anything to survive,’ to acceptance of the reality, which is: ‘This is miserable. I’m not sure I want to be alive if every day feels like this.’” Adult child caregiver of 64F with primary peritoneal cancer and venting G-tube |
| There is no road map |
| “I just want to know if what I am experiencing, what I am going through…is that typical? Is it a good thing? Is it a bad thing? Should I be alarmed?” 57F with ovarian cancer and ileostomy |
| “It would be good to somehow add in that extra layer of a nurse care manager saying, “Let’s have a one-on-one meeting about your care plan. Your doctor is indicating you’re nearing the end of your battle, and so now is the time where you’re going to be facing a lot of choices, each one complicated and difficult.” Adult child caregiver of 64F with primary peritoneal cancer and venting G-tube |
| “So much stuff seems to be common knowledge…but to someone coming in from the outside as a patient, it’s like a different language or it’s totally not known. …I have absolutely no idea what people are talking about sometimes.” Spousal caregiver of 52F with ovarian cancer and TPN and a PICC line |
| “We never got advice that was like, ‘This week, this should be happening, and then you should be at this stage in the following week, and then the following week.” Spousal caregiver of 52F with ovarian cancer and ileostomy |
| The caregiver experience is unwitnessed and unattended |
| “I kind of acted as her brain in remembering things and communicating things-sometimes multiple times–that had not sunk in for her. She received so much information at the same time that was so incredibly overwhelming.” Spousal caregiver of 69F with ovarian cancer and an IR drain |
| “I was scared because I was afraid of making a mistake.” Spousal caregiver of 52F with ovarian cancer and ileostomy |
| “I mean at least one of my family members had asked, did [the cancer center] work with therapists or have groups or something?… They felt like they needed some support, and [the cancer center] gave them a list of names, but nobody’s responding to them.” 63F with ovarian cancer and PleurX |
| The burden of illness shapes patient identity and interpersonal relationships |
| “You don’t want to be the crybaby all the freaking time, and you don’t want your friends and your family to hear all about your disease.” 39F with ovarian cancer and colostomy |
| “I think there’s some resentment that she’s dependent upon me, and that’s why she lashes out every now and then.” Spousal caregiver of 67F with fallopian tube cancer and ileostomy |
| “You start feeling better, and then you’re like, Ί feel so much better, I’m ready to go home.’ And then they’re [the clinicians] like, “Oh no, you’re not going home.” 52F with ovarian cancer, TPN, and a PICC line |
| “There’s so much trust that we built up with [the oncologists] that got us over some of the fears, especially the first time she was in the hospital for the small bowel obstruction.” Spousal caregiver of 52F with ovarian cancer, TPN, and a PICC line |
| Systems change is needed to minimize suffering |
| “[Patient] did not like to communicate too much and had a tendency to sort of gloss over [how she was feeling]. …As a caregiver, I couldn’t call and have a conversation with the doctor or the nurse. It had to go through, you know, [the patient] would always get the call back.” Romantic partner caregiver of 55F with ovarian cancer and TPN |
| “I ordered supplies from Amazon to be emergency delivered, but the visiting nurse had to order supplies, too, because they didn’t have any of the right supplies, and that wasn’t part of any of the prescriptions that we got coming home.” Spousal caregiver of 52F with ovarian cancer and ileostomy |
| “[We started hospice] later than we should have, but as long as the patient wants to continue to receive chemo treatment, you can’t move into hospice. You can’t do both, according to insurance.” Adult child caregiver of 64F with primary peritoneal cancer and venting G-tube |
| “What they told me in the hospital on discharge was, “Oh, your VNA will know all about things.” Well, that’s not accurate. I mean I don’t think they see these [percutaneous nephrostomy tubes] a lot.” 67F with endometrial cancer and percutaneous nephrostomy |
Reaching a turning point.
For patients and caregivers alike, the development of PC-associated complications represented a turning point in the patient’s illness trajectory. Patients and caregivers described major changes in patients’ physical, psychological, social, and functional well-being. Both found it challenging to adapt to patients’ complex health demands while grappling with fears the patients’ health might never improve.
There is no road map.
When confronted with a complex care need, patients and caregivers faced a steep learning curve. Participants described adapting to an unanticipated and fragmented curriculum. Participants wanted anticipatory guidance regarding the roles of different health professionals and what to expect in the hospital, after a procedure, after discharge, from palliative care, and from hospice. Participants also wanted more information related to how to manage symptoms and new complex care needs.
The caregiver experience is unwitnessed and unattended.
Caregivers described being patients’ “minds and hands.” Many caregivers described wanting more psychosocial support but feeling left out of the predominantly patient-facing resources available at the cancer center. At times, caregivers struggled to contact the healthcare team or to find time to care for themselves. A common fear among caregivers was inadvertently harming their loved one when performing a complex care task, and caregivers frequently noted feeling both burdened by the demands of caregiving and guilty for not doing enough.
The burden of illness shapes patients’ identity and interpersonal relationships.
A new complex care need compromised patients’ identities as nurturing, self-sufficient individuals. Patients’ views of themselves were further threatened by changes in their body images and functional statuses. Patients’ relationships with caregivers, family, friends, and the healthcare team were simultaneously both a source of strength and strain. High-quality communication with the healthcare team was particularly important. Participants spoke positively about clinicians who were straightforward and compassionate; however, participants experienced increased distress when clinicians did not recognize when their health was improving.
Systems change is needed to minimize suffering.
A new complex care need imposed both financial and logistical burdens on patients and caregivers. This burden was exacerbated by characteristics of the healthcare system that made it difficult for participants to obtain the supplies, advice, and resources they needed to safely manage the patient’s health care needs at home. Participants faced difficulties accessing health care professionals, navigating insurance and prescription coverage, and maintaining consistent home care, which further added to their stress and suffering.
DISCUSSION
Our findings suggest patients and their caregivers have significant unmet needs after a palliative procedure for PC-associated disease complications. The patients and caregivers in our sample encountered physical, psychosocial, practical, and existential challenges as they adjusted to a new normal they had not anticipated. Our findings provide context to prior studies that have exclusively assessed physical well-being, symptoms, or survival in patients who have undergone a palliative procedure for PC. In our study, patients’ overall HRQoL, physical well-being, emotional well-being, and functional well-being scores fell below the 25th percentile scores identified in a population-based sample of people with cancer [17]. Our findings are consistent with those of a prospective study of 53 patients with malignant bowel obstruction, two-thirds of whom underwent a palliative procedure [31]. Taken together, these findings underscore the urgent need for supportive care interventions that address the physical, psychosocial, practical, and existential concerns of patients with PC.
The patients in our sample experienced a loss of independence, and their caregivers were forced to perform medical and nursing tasks with limited training. Our findings are consistent with those of a prior study, in which 59% of cancer caregivers in a representative sample reported they did not receive training for all the care they provided [32]. In our sample, the impact of caregiving on caregivers’ schedules exceeded established thresholds for a negative caregiving experience [33]. Accordingly, the caregivers in our sample reported worse mental health than the general population [14]. These findings are concerning given research that suggests greater depressive symptoms are associated with declines in physical health among cancer caregivers [34]. One way cancer care facilities can improve caregivers’ access to clinicians and psychosocial support services is to provide them with separate health records that can be used to refer and bill caregivers for psychosocial care [35]. Caregiver respite services may also improve patient and caregiver well-being. Research that evaluates the feasibility of including respite services in routine cancer care is highly warranted.
The prevalence of anxiety and depression symptoms among the patients in our sample points to the need for dedicated psychosocial management strategies and follow-up. Such follow-up has traditionally been low and underutilized among patients with ovarian cancer [36], which underscores the need to identify barriers to integrating psychosocial care into the oncology setting. Notably, behavioral disengagement was endorsed by more than a quarter of patients. In a longitudinal cohort study of 345 patients with advanced cancer, use of behavioral disengagement was associated with higher rates of advance care planning and lower rates of aggressive care near death [23]. The study authors suggested behavioral disengagement may represent a protective coping mechanism among patients who are aware of their prognosis. In the setting of a complex care need, however, behavioral disengagement may limit the extent to which a patient learns to perform essential self-care tasks and prevent and manage complications. Given that coping strategies are modifiable, research exploring the interplay between behavioral disengagement, self-care, and advance care planning in patients with PC-related complex care needs is warranted.
More extensive PC predicts worse overall survival in patients with advanced gastrointestinal and gynecologic cancers [1]. Nevertheless, just over one-third of patients in our sample acknowledged they were terminally ill, and only one in ten had discussed with their clinicians the type of care they would want to receive if they were dying. In prior studies of patients with incurable cancers, roughly half acknowledged the terminal nature of their illness [37, 38]. Our study and these two prior studies assessed terminal illness acknowledgment using the same single item. In the future, comprehensive assessments of prognostic awareness in patients with PC should also assess patients’ knowledge of the incurable nature of their disease, the goals of therapy, and estimated life expectancy. Nevertheless, research suggests patients who acknowledge the terminal nature of their illness are more likely to have discussed the end of life with their clinician [39]. In turn, end-of-life discussions are associated with less aggressive medical care near death [20], which is associated with better HRQoL among patients at the end of life and better adjustment among bereaved caregivers [20]. While prognostic awareness is generally low among adults with advanced cancer [39], structured communication interventions such as the Serious Illness Care Program can guide clinicians to sensitively discuss patients’ values, goals, and care preferences at the end of life [40]. Research suggests interventions to promote timely goals of care discussions are feasible in outpatient settings [41].
Our study has several limitations. First, our sample was composed of patients with a new complex care need and their caregivers who agreed to enroll in a RCT. The experiences of individuals who were ineligible, unwilling, or too ill to participate may not be reflected in our data. Second, we conducted interviews with study participants after they completed the BOLSTER intervention. Participants’ experiences in the study may have influenced their responses to the interview questions. Third, our sample was recruited from a National Cancer Institute-designated Comprehensive Cancer Center and was homogenous in terms of race, ethnicity, and educational attainment. Our findings may not generalize to patients and caregivers who receive care in community settings or who are from different cultural, socioeconomic, educational, and linguistic backgrounds than the individuals in our sample. In ongoing work, we are translating and culturally adapting BOLSTER to Spanish and testing the intervention in a more diverse population as part of a multi-center, prospective randomized clinical trial.
CONCLUSION
Patients and their caregivers face unique physical, psychosocial, existential, and practical challenges after an acute hospitalization for PC. There is an urgent need for supportive care interventions that address the complex needs of these patients and their caregivers.
Highlights.
Patients with peritoneal carcinomatosis and caregivers report complex physical, psychosocial, and existential challenges
Patients’ mean health-related quality of life score was below the 25th percentile for patients with cancer
Caregivers reported worse mental health than the general population
Just over one-third of patients acknowledged the terminal nature of their illness
Patients and caregivers require training and psychosocial support after palliative procedures for peritoneal carcinomatosis
FUNDING
This study was funded by the National Cancer Institute (R21CA223684 and R01CA270040; PI: Wright). JAW is supported by grant T32HS013852 from the Agency for Healthcare Research and Quality.
Footnotes
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DECLARATION OF COMPETING INTERESTS
The authors have no conflicts of interest to declare.
Declaration of interests
The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.
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