Quality of Life and Pressure Ulcers: What is the Impact?
H aving a pressure ulcer (PU), particularly a stage 4 ulcer, impacts an individual’s life in overt as well as covert ways. Each individual defines this impact based on the sum of unique experiences. The elusive factor is quality of life (QoL), which can only be defined by the individual.
Quality of life is a vague, ethereal construct that reflects an individual’s perspective on life satisfaction regardless of the situation. Quality is a term that is best described by each individual at each stage of his or her life and may change day by day or, in some cases, hour by hour. Quality of life in an individual with a PU incorporates such variables as pain and suffering, the financial costs of healthcare, the strain on personal resources, and overall impact on one’s life and activities of daily living (ADLs). While this is not something one routinely communicates to other individuals, how one feels about life at any given time is not only important, but an important part of who the individual is. Overall QoL encompasses 4 primary domains of well-being and functioning. The domains include physical and occupational, psychosocial, social, and somatic.1 Quality of life indeed is defined by and has an impact on one physically, emotionally, and psychologically, as well as the individual’s work role in life and relationships.
In the 1980s, the term health-related quality of life (HRQoL) emerged in an attempt to narrow the all-encompassing QoL term and define it within the healthcare context.2 Health-related QoL refers to the “impact of disease and treatment on disability and daily living, or as a patient-based focus on the impact of a perceived health state on the ability to lead a fulfilling life.”2 In 1993, Patrick and Erickson3 defined it as the “value assigned to the duration of life and modified by impairments,” eg, a PU. Franks and Moffatt4 noted that when an individual with a chronic wound is feeling ill, he or she is likely experiencing “feelings of pain and discomfort or change in usual functioning and feeling.” This is the core consideration in HRQoL, as the individual’s own sense of well-being is the most important factor rather than what a healthcare provider might determine it to be.5 Culture also influences one’s perception of his or her HRQoL.
A wound is defined as a disruption in the integrity and function of body tissue, whereas having a wound, according to van Rijswijk,6 implies imperfection, which certainly impacts physical and emotional vulnerability. Any visible wound leads to greater emotional or psychological trauma than would an invisible wound, albeit feelings of shame and embarrassment might still be present. One type of wound, a PU, is defined as “any lesion caused by unrelieved pressure resulting in damage to underlying tissue. Pressure ulcers are usually located over bony prominences (such as the sacrum, coccyx, hips, heels) and are staged according to the extent of observable tissue damage. Pressure ulcers vary from superficial tissue damage to deep craters exposing muscle and bone.”7 Pressure ulcers are staged from stage 1, where there is non-blanchable erythema but no break in the skin, to stage 4, where the defect can extend into the muscle and even expose bone. Pressure ulcers can be prevented in many instances; however, those who are acutely ill, have their mobility affected, are older, and have multiple comorbidities are at greater risk.
Impact of a Pressure Ulcer on Health-Related Quality of Life
Relatively few studies have been done related to QoL or HRQoL in individuals with PUs. In 2000, Langemo et al.8 conducted a qualitative study. Using a phenomenological methodology, they interviewed 8 subjects, 4 with current PUs and 4 who had PUs previously. Of those with previous PUs, all had been healed at least 6 months. All PUs were stage 2–4, with the majority stage 4. Six of the 8 subjects had multiple PUs. Seven subjects were male, and 1 was female, and the age ranged from 27–52 (M=38) years of age at the time of the interview. Four of the 8 subjects had a spinal-cord injury, and 5 had undergone flap reconstruction. Subjects expressed impact on QoL related to impact on life and necessary life changes, psychospiritual impact, pain, and the grieving process. They will be discussed in the following section.
While data do not exist on overall impact on HRQoL in individuals with a PU, in a study of patients with leg ulcers, it was discovered that patients spend 1.5–2 hours/day, or 8% of each day’s wakeful hours, pondering their wounds.6 Similar results could be hypothesized for individuals with PUs.
Meaning/Significance of the Pressure Ulcer
The meaning and/or significance of a PU varies from person to person. Many of those with PUs have viewed the ulcer as “the worst thing that can happen.”9 On the other hand, some family caregivers view PU formation as a normal consequence for the bedridden.10
Time for Healing and Healing Expectation
A concern whether the PU would heal, concomitant with an expectation that it would heal, has been mentioned in studies2,4,11 as a patient concern. Individuals need hope that the ulcer will heal, the pain, odor, and treatments will end, and that they will eventually regain their former lives.11 When a PU is present for 6 or more months, pessimism can prevail, impacting the individual’s compliance, nutrition, depression, and ultimately healing. In the Langemo et al.8 phenomenological study, most subjects expressed an unknown time frame for healing of the PU, which in turn was perceived as frustrating, depressing, and restrictive on ADLs.
A Pressure Ulcer as a Way of Life
All 8 subjects in 1 study emphasized how difficult it was for them to cope with the necessary immobility required for healing of PUs and how important it was to develop patience.8 One male subject spoke of his long healing process with a stage 4 PU that included a skin flap repair. Specifically, he said having a PU was “a normal way of life for me. The wound controls my life. I have a special bed, limited positions, dressing changes, home health, odor and drainage, clothing limitations…I cope. I’m fairly isolated.” Subjects in this study also expressed difficulty handling the fatigue from sleep disruption.
Social Isolation Related to Having a Pressure Ulcer
In the results from an 8-subject qualitative study, subjects reported that being alone in their rooms much of the time had significant negative impact on their lives.8 One male subject noted, “I love working and being with people. I am a people person. Don’t keep me isolated or I’d die.” One subject who lived 4 hours from the hospital particularly expressed missing contact with family. Subjects also reported adverse effects from antibiotic therapy (eg, diarrhea, need to be home for intravenous medications, need for protective isolation) that contributed to feelings of social isolation. One 52-year-old subject with paraplegia noted, “I can remember lying in the hospital…looking at the paint on the wall. And I could tell you how many little bubbles were in that particular spot. I memorized them to keep from going mad.”8
Impact of Having a Pressure Ulcer on Body Image
Only 1 study that addressed impact on body image was located.8 A male with paraplegia who had 19 surgeries following stage 4 PUs told researchers, “My butt ain’t my butt anymore. It ain’t the butt I was born with. I have muscle from all other parts of my body holding it together down there. It ain’t a pretty sight.” A 37-year-old gentleman who had a stage 4 PU and flap repair said, “It is a really scary feeling to wake up and find you have lost half of your buttock, actually part of your body. It’s gone. Scary deal, you know.” Another expressed the feeling of humiliation from having multiple healthcare providers routinely viewing body parts that are normally private.
Age and Gender of Individuals with Pressure Ulcers
While no studies on HRQoL in subjects with PUs were found, studies2,4,5,9,12,13,16 on individuals with chronic wounds or venous ulcers and their impact in relation to age and gender were located. One could hypothesize that similar findings would be evident for individuals with PUs. There were contradictory findings in these studies. In 1 study of individuals with venous ulcers, those who were younger demonstrated greater negative emotions related to their ulcers and greater problems with their mobility than did older individuals (p12 Similar findings were reported by Franks and Moffatt.5 In a cross-sectional study of age- and gender-matched leg ulcer patients (n=758) that used the Nottingham Health Profile, younger males reported experiencing poorer HRQoL than older males. Conversely, age was found to not be a statistically significant factor in a study of 63 chronic leg ulcer patients.2 Obviously, findings related to age are contradictory, and further study is needed.
Similarly, findings related to the impact of HRQoL on gender are inconsistent in the literature. Women were found to have poorer HRQoL than males in a database study of 758 leg ulcer patients.1 Results vary with gender in relation to specific factors. When considering pain and physical mobility, males’ HRQoL was poorer than females,13 while in the domains of vitality and social and physical functioning, females had poorer HRQoL scores than males.2 Overall, in the general population, females generally score poorer than males on HRQoL, particularly so in older age groups. Thus, poorer HRQoL scores in females with ulcers may be more closely related to gender than to the ulcers.5
Pain with a Pressure Ulcer
Pain is an almost ever-present problem in patients with any type of ulcer, including PUs. A study of 32 patients with stage 3 and 4 PUs assessed the presence of and care related to pain. Eighty-four percent of subjects reported pain even at rest, and 18% described the pain as excruciating. Of those who experienced pain, only 6% reported receiving pain medications. It was further noted that 88% expressed experiencing pain with dressing changes, even when moist wound healing was observed.14 All 8 subjects in the Langemo et al.8 study verbalized experiencing the impact of pain from a PU. Krasner15 conducted a phenomenological study of 42 nurses who cared for patients with wounds. It was documented that nurses who cared for these patients coped by denying the pain or failing to hear the cries of the patients. Krasner reported that confronting the challenge of pain occurs when the healthcare provider has to come to terms with his or her feelings of frustration, anger, helplessness, and hopelessness.15
Odor and Drainage Related to a Pressure Ulcer
Certain microorganisms are known to produce characteristic, often offensive, odors, eg, the ripe, fruity, somewhat foul smell of Pseudomonas. An individual with a highly exudating and/or odorous PU may be emotionally or psychologically embarrassed or even devastated by the odor emanating from the wound and use drastic measures to eliminate the odor. Individuals with PUs often make attempts to mask the odor with room deodorizer or cologne and express feeling dirty. Some individuals isolate themselves. In addition, the need for frequent dressing changes, for bulky dressings, or for a vacuum-assisted device to handle the exudate can significantly impact self-image and lifestyle and decrease mobility. Once at home, family members may be required to change dressings. One female patient with a vacuum-assisted device expressed the embarrassment she had to overcome in having her son-in-law change her dressings. Relationships are impacted under such circumstances, as demonstrated by the negative impact on QoL documented in a 1995 study16 of 88 patients with malodorous leg ulcers.
Financial Impact of a Pressure Ulcer
The impact on one’s finances can be significant, particularly if one must miss work on a long-term basis. In addition, the cost of inpatient and outpatient care can be significant. Patients too often find themselves in situations of having to choose between commitments to their work and compliance with medical management for the ulcers. For example, how does a truck driver maintain elevation of a lower extremity for any length of time? These individuals have large out-of-pocket expenses with supplies, medical care charges, medications, trips for appointments, home modifications, etc. They are often forced to choose between medications and supplies or groceries. Only 1 of 8 subjects in the Langemo et al.8 study expressed financial impacts on his life. The impact was associated less with the cost of care or loss of wages and more with the need to feel a productive part of society.
The breadth and depth of impacts related to having a PU on HRQoL is significant. Health-related QoL is impacted physically, psychologically, emotionally, spiritually, socially, and financially. While the HRQoL effects related to a variety of ulcers are documented, research focused on the impact on individuals with PUs is limited, and further research is necessary.
Healthcare providers in every clinical setting who care for individuals with PUs must be acutely aware of and sensitive to the impact on and issues surrounding the individuals’ HRQoL. The impacts are tremendous, ongoing, and unique for each individual. Care must be appropriately focused. Education that is individualized and customized to patient needs and patient-defined QoL goals is mandatory.