Conceptual or Theoretical Framework
Just 2 of the 35 studies were guided by an explicit conceptual or theoretical framework. Cameron et al11 used classical conditioning theory42 to examine the prevalence of persistent aversive symptoms, such as anticipatory nausea and vomiting, in HD survivors. Wettergren et al42 cited the Wilson and Cleary's Model43 of causal relationships between individuals' health characteristics and HRQOL outcomes.
Thirty-four of the 35 studies (97%) were correlational,8-38,40-42 and one was experimental.39 Thirty of 35 studies (86%) were retrospective and cross-sectional.8-14,16-22,24,26-28,30-38,40-42 Just 5 of the 35 studies (14%) used longitudinal, prospective designs.15,23,25,29,39 Twenty of the 35 studies (57%) were case-control, and 15 (43%) were cohort studies.
Sample size ranged from 42 to 818 participants. In 15 (43%) studies, the sample included fewer than 100 participants. A nonprobability convenience sampling strategy was used for all studies. Participants were enrolled in the studies using hospital-based records and/or tumor registries. All but 2 of the study reports9,11 provided information about the numbers of patients who were eligible but did not participate. Study participants ranged in age from teens to mid-80s; reports of 2 studies did not include an age range.37,38 In 26 (74%) of the studies, 51% to 60% of the participants were male. Only 6 studies8,12,20,21,26,28 included more female than male participants, and 3 studies9,10,13 included only male participants. Twenty-nine (83%) studies focused on HRQOL in HD survivors who were more than 1 year but less than 35 years after treatment completion, and 6 (17%) studies focused on HRQOL of those newly diagnosed or less than 1 year after treatment completion.13,15,23-25,27 A complete description of the diagnostic stages and treatment regimens was included in all but 4 studies.20,21,23,24 Early-stage disease was defined as stage I-II, and late stage, as stage III-IV. In one study, further extent of disease was defined by delineating between the absence (substage A) or presence (substage B) of key prognostic indicators including fever, night sweats, or pruritus to differentiate between early- and late-stage disease.13 Twenty-seven (77%) studies were conducted in samples with early- and late-stage disease. Study samples were treated from 1965 to 2003. Length and type of treatment were dependent on stage of disease and ranged from 3 to 18 months for the studies in this review.
A total of 29 different instruments were used to measure HRQOL in adult HD survivors; the most commonly used instruments are listed in Table 2. Ten (29%) studies used researcher-constructed questionnaires,8,10,11,13,14,18,22-24,31 and the remainder used valid and reliable standardized instruments (Table 2). The instruments were administered most frequently as questionnaires that were mailed or administered via a telephone or face-to-face interview.
Domains of HRQOL
The variables reflecting the domains of HRQOL addressed in this integrative literature review are listed in Table 3. Twenty-seven of the 35 studies (77%) addressed the physical domain using variables such as fatigue, sexuality, and cognition. Twenty-six (74%) studies addressed the psychological domain using variables such as distress, depression, and anxiety. The social/functional domain was addressed in 16 (46%) studies; variables included relationships, work, and activities of daily living. The spiritual domain was addressed in only 2 of the 35 studies (6%)13,42 by focusing on survivors' worldview and life meaning.
Fatigue remains a common problem for HD survivors, even several years after the completion of treatment. Hjermstad et al29 found that a sample of 476 HD survivors reported higher levels of fatigue than a sample drawn from a general, healthy population.
Correlates of fatigue reported by HD survivors include age, education, gender, HD stage, type of treatment, and the presence of other physical symptoms. Loge et al36 reported that total fatigue was significantly higher among survivors 60 years or older compared to younger HD survivors. Participants with fewer years of education also reported greater fatigue than those with more years of education. Norum and Wist38 found that men reported significantly higher levels of fatigue than women did. In addition, patients diagnosed with later stages of disease and those who received combination cancer therapy (both chemotherapy and radiation therapy) experienced a greater delay in the return of their energy levels than those who were diagnosed with earlier stages of disease and those who received monotherapy.14 Furthermore, patients who received combination therapy reported a higher level of fatigue than those who received monotherapy.15,28 In addition, Norum and Wist38 found that patients who received mantle radiation experienced more fatigue and dyspnea than those who did not receive radiation up to 10 years after completion of treatment.
In one study, so-called B symptoms, such as fever, night sweats, and weight loss at diagnosis, were found to be the only defining disease characteristics that were positively correlated with survivors' fatigue after treatment.29 In other studies, survivors' reports of cardiac disease, psychiatric disease, tobacco use, and low exercise frequency were correlated with relatively high levels of fatigue after treatment.20,40
ANTICIPATORY NAUSEA AND VOMITING
Anticipatory nausea and vomiting are another common physical problem experienced by HD survivors.11,12,17 According to Cameron et al,11 this conditioned response-a feeling of distress experienced in relation to the typical sights and/or smells in the medical environment-has been reported by as many as 55% of survivors at one point in time and is most likely to occur just after diagnosis but may continue up to 2 years after treatment. Furthermore, Kornblith et al16 reported that 39% of HD survivors continued to experience nausea for at least a year after treatment in response to sights and smells, but episodes of vomiting were a rarer occurrence.
Hodgkin's disease survivors experience several other symptoms related to the treatment received in the years after treatment including cardiovascular and respiratory complications,20,38 shortness of breath and tachycardia,8 and thyroid dysfunction.32 Nevertheless, Adams et al8 reported that although HD survivors reported moderate to severe problems with fatigue, shortness of breath, chest pain, and dizziness several years after treatment completion, they scored their health as good as or better than that before diagnosis.
Some researchers studied survivors' sexuality. Cella and Tross13 found significantly lowered motivation for intimacy among 60 male HD survivors compared with a healthy control group. Kornblith et al18 noted that 37% of 273 HD survivors reported one or more sexual problems; the most common were decreased interest in sex and loss of sexual satisfaction. Fobair et al14 found that the most common sexuality problems were infertility and decreased interest in sexual activity in a sample of 403 HD survivors. Greil et al28 found that survivors who had received combination therapy reported more infertility problems and less sexual enjoyment than did those who had received monotherapy.
A few researchers have studied cognition in HD survivors. Joly et al31 found that cognitive problems manifested as memory impairment and poor concentration even several years after treatment completion. Similarly, Devlen et al23 reported that 47 of 120 HD survivors described having difficulty recalling simple facts, such as their telephone number, after completing treatment. These memory impairments were attributed to the older age of the samples and to depression, anxiety, and possibly minor brain damage secondary to chemotherapy or viral infection during treatment.
The incidence of emotional distress among HD survivors varied across the 35 studies. Cella and Tross13 reported that survivors did not differ significantly from case-controls with regard to emotional distress. The findings of other studies, however, revealed that emotional distress was higher in the survivors than in healthy populations.18,19
Correlates of emotional distress include gender, stage of HD, and marital status. Female HD survivors in one study reported lower levels of distress than their male counterparts did, manifested as symptoms associated with posttraumatic stress disorder, such as intrusive thinking and avoidance.37 In contrast, male HD survivors in another study reported less emotional distress after treatment than females did.27 Furthermore, HD survivors diagnosed with later stages of disease (stage IIB, IIIB, IVA, or IVB) were found to be at higher risk for emotional distress than those diagnosed with earlier stages.13 And HD survivors who were married had lower levels of distress than those who were not married.21
ANXIETY AND DEPRESSION
It is estimated that up to 50% of HD patients and survivors report anxiety and/or depression during the first year after diagnosis and treatment.24 The influence of gender on reports of anxiety and depression is unclear. Although both Zabora et al21 and Fobair et al14 reported no correlation between gender and depression in HD survivors, Loge et al34 noted that anxiety was greater for women than for men. Age and educational level may be related to anxiety and depression. Kornblith et al17 found that survivors older than 40 years had a higher incidence of depression than their younger counterparts, and both Loge et al33 and Kornblith et al17 found that HD survivors with limited educational backgrounds experienced higher levels of anxiety and depression than those with higher levels of education. Marital status, however, does not seem to be related to anxiety and depression. Loge et al34 found no significant difference in anxiety and depression between HD survivors who lived alone and those who were married.
Although it is common for HD survivors to return to their usual level of functioning after treatment is completed, many experience changes in their ability to function in social and occupational roles.14,18,24,41 For example, difficulty returning to work has been reported in up to 42% of HD survivors.14 Many HD survivors who had trouble returning to work noted that they had a diminished capacity to complete work-related tasks or adjust to the work environment.10 In addition, when compared to survivors of testicular cancer, HD patients were significantly more likely to change jobs or stop working. Flechtner et al25 reported that the main reason for unemployment among HD survivors was early retirement due to the disease and its treatment.
Several factors associated with permanent disability after treatment have been identified, including having little education and low income, having been treated with combined chemotherapy and radiation therapy, being older than 40 years, having depression and/or anxiety, and having experienced exertional dyspnea and pain or stiffness in the shoulders secondary to mantle field radiation.22,40 Gender also influences function. Fobair et al14 reported that women had a greater decrease in activity tolerance after treatment for HD compared to men. Similarly, Loge et al35 found that women survivors scored lower than men did on a measure of the functional domain of HRQOL.
In addition, stage of HD may influence functioning. Survivors who had been diagnosed with later stage HD were found to be at highest risk for functional adjustment problems, such as readapting to premorbid work schedules during the first 2 years after treatment.13 In contrast, Devlen et al23 found that a large proportion of survivors of both early- and late-stage HD failed to return to work and to resume normal leisure activities up to 1 year after completion of treatment. Hodgkin's disease survivors experienced a greater decrease in leisure and work activities than did those who had testicular cancer, which was attributed to limited energy and type of treatment.10
The physical domain symptom of fatigue has been found to affect HD survivors' ability to participate in leisure activities for many months after treatment. Devlen et al23 noted that 48 of the 120 survivors (40%) surveyed continued to report little interest in leisure activities even 1 year after the completion of treatment.
Several researchers identified changes in marital status, with an increased incidence of divorce and separation, among HD survivors.22,25 Approximately 20% of participants in one study reported changes in their relationships that they associated with their cancer diagnosis and treatment.25 Participants in another study reported having fewer children after diagnosis and treatment for HD compared with healthy controls.31
Only 2 of the 35 studies (6%) addressed the spiritual domain of HRQOL. In one study, survivors reported that they had a greater appreciation for life after treatment.13 In the other study, survivors identified family, personal health, work, and relationships with close friends as the most important aspects of their lives after HD diagnosis and treatment.42
State of the Science
This integrated review of research that had been conducted in the United States and Europe adds to our understanding of the state of the science regarding the HRQOL of HD survivors. Overall, although survival has improved for adults diagnosed with HD through advancements in curative treatments, the research revealed that the physical, psychological, social/functional, and spiritual domains of HRQOL are compromised for months or even years after completion of treatment.
Although it is encouraging to know that HD is considered a curative illness, the potential for overtreatment of young adults diagnosed with HD is a topic of discussion and concern. The long-term impact of curative treatment on the physical domain of HRQOL is especially problematic for young adult HD survivors because of factors such as age at the time of chest irradiation and the use of alkylating chemotherapy agents that increase the risk of secondary lung and other cancers and cardiac disease in long-term survivors. In 1988, clinical researchers explored treatment reductions intended to reduce life-threatening adverse events caused by radiation while maintaining cure rates. By 1991, this fifth novel treatment regimen-named Stanford V for late-stage disease-shortened treatment courses, instituted cumulative toxic dose reductions, and decreased radiation doses and volume while maintaining favorable survival outcomes for HD.44 Consequently, current clinical trials have been designed to determine the efficacy of treatment reductions in patients with lower radiation therapy doses and less toxic chemotherapy regimens for earlier stage disease as the risk for late mortality from causes other than HD continues to threaten survivors many years later.3 However, until more clinical data support favorable long-term HRQOL outcomes with treatment reductions in early- and late-stage disease, researchers suggest that caution be taken when considering changes in standard treatment.45
The literature revealed that fatigue was the most common problem in the physical domain of HRQOL. The finding that fatigue was more severe for HD survivors than for healthy controls even years after treatment completion is consistent with prior research about cancer-related fatigue. Indeed, fatigue has been reported to occur in approximately 75% of all cancer patients and can be a more common adverse effect of treatment than nausea, depression, or pain.46 The high incidence of cancer-related fatigue has led to proposing that it be considered the sixth vital sign.47
Late medical complications of HD therapy such as cardiac disease and abnormal thyroid and pulmonary function may contribute to the prevalence of fatigue in HD survivors compared to other cancer survivors.45 Whether the occurrence of fatigue in cancer survivors is associated with treatment modality, disease, or nonclinical factors such as socioeconomic status, age, or gender, patients report that this assumption profoundly alters their quality of life before and after treatment.27,36 Increasingly, research findings support the thesis that increased physical activity ameliorates the incidence of fatigue during and after treatment and improves physical functioning and other domains of quality of life.48,49 For example, Oldervoll et al39 reported that fatigue and physical conditioning improved when HD survivors participated in an aerobic exercise program.
Another common physical domain problem is nausea and vomiting. Since the introduction of 5-Hydroxytryptamine3 (5-HT3) receptor antagonists in 1991, there has been a significant reduction in posttreatment vomiting, yet treatment-related nausea continues to be a recurrent and continuing consequence of chemotherapy and is considered far more difficult to control than treatment-associated emesis. In one study of HD survivors, 63% experienced persistent anticipatory nausea and 5% reported anticipatory vomiting, which were thought to be a response to reminders of treatment, for as long as 6 to 140 months after completion of chemotherapy. Although these reactions lessened over time, anticipatory nausea was experienced by half the patients for more than 2.5 years.50 Promising prevention strategies for the control of anticipatory nausea and vomiting include both new guidelines for using antiemetics during treatment and behavioral therapies such as hypnosis.51,52
With regard to sexuality, the finding that HD survivors reported lowered motivation for intimacy, along with a decreased interest in sex and loss of sexual satisfaction, is consistent with findings from other studies reporting that older adolescents and young adults who experience distress, depression, and anxiety may experience or show difficulty in responding to intimacy and lack sexual motivation when stressed.53 Fertility preservation may also be a concern of young adults with HD and their partners. Issues surrounding fertility and sexuality concerns should be addressed and evaluated before, during, and after treatment.54
Studies of the physical domain of HRQOL focused little attention on memory impairment and cognitive problems although HD survivors often report difficulties with memory, attention, and new learning after treatment. The findings of one meta-analysis of specific cognitive effects of cancer treatment in adults indicated that executive function, verbal memory, and motor function were negatively affected by systemic cancer therapies.55 There is some evidence that chemotherapy negatively affects cognitive ability, sometimes referred to as "chemo brain" or "chemo fog."56,57 Other factors that may influence cognitive decline include stress, depression, sleep disturbances, fatigue, or the cancer process itself with the release of toxic by-products (cytokines). Researchers have begun to report that there is a stimulation of cytokines in breast and colorectal cancers that may be implicated in deficits of cognitive function.58 Other researchers have reported survivor complaints of cognitive problems that can negatively affect daily functioning, vocational interests, and other aspects of quality of life. Thus, a better understanding of cognitive function in HD survivors is an important area for future research.
The psychological domain of HRQOL continues to be a frequent focus of research for long-term survivors of cancer. The most common variables measured in the psychological domain in the studies in this review were depression and anxiety. The findings revealed mixed results that may be attributed to a variety of instruments used to measure psychological distress and the diverse time points for measurement, ranging from during treatment to many years after treatment completion. Developmental level at the time a young adult is diagnosed with a serious illness may have a significant influence on psychological adjustment. For example, young survivors face the disruption of developmental milestones such as establishing intimate relationships, fertility, child rearing, and financial concerns, whereas older adults are looking forward to retirement.59,60
Survivor responses in the functional and social domains of HRQOL were frequently investigated as well. Seven researchers24,25,27,28,31,41,42 investigated how HD survivors perceived changes in leisure activities, finances, and employment in response to medical conditions and treatment effects. Other investigators focused specifically on how fatigue compromised energy levels and a decline in physical performance that had a negative impact on work and leisure time.10,29,32,33,35,39,40 Although some researchers have argued that activities not directly related to health status are outside the purview of the healthcare provider, such as the measurement of job satisfaction and economic factors, the impact of treatment on the social/functional domain of HRQOL for those with cancer or chronic illness is relevant to morbidity, mortality, and long-term surveillance.61,62 Functional status has not traditionally included measurements of work satisfaction and the financial consequences of illness, but as demonstrated in this review, these issues have become increasingly important to cancer survivors. Advances in early detection and less debilitating treatments have led to an increased presence of cancer survivors as active members in the workplace, reinforcing the need to include this essential component in the measurement of HRQOL.63
Only 2 studies investigating the spirituality domain of HRQOL in HD survivors were located. Religious and spiritual coping have been shown to improve other domains of HRQOL in cancer survivors. In a study of 170 patients with advanced cancer, positive religious coping was related to better existential QOL dimensions, as well as overall QOL.64 Balboni et al65 reported that 72% of respondents with various types of cancer indicated that they had little opportunity to discuss spiritual concerns with their healthcare provider. Further studies are needed to understand the spiritual and religious needs of cancer survivors.66
Theoretical and Methodological Issues
One major finding of this review is the lack of explicit theoretical frameworks used to guide the research. Only 2 (6%) groups of researchers used an explicit theoretical framework to guide the research. The other researchers typically provided extensive explanations to justify the design and use of multiple instruments in the introduction section of the article. A theoretical framework provides a structure for all aspects of a study, from selection of study variables to specification of links between variables to interpretation of results. Atheoretical studies may yield heuristically interesting results but do not contribute to advancement of knowledge because the "why" of the study results cannot be explained.
Researchers are encouraged to use existing frameworks for future studies. For example, Wilson and Cleary62 described a theoretical framework that posits causal relationships among biological and physiological factors, symptoms, functioning, general health perceptions, and overall quality of life. Ferrans et al67 further developed and revised this model to describe the influences of HRQOL. The Ferrans et al67 model underscores the importance of patient values and preferences and internal factors such as developmental stage when designing interventions that are intended to change or modify behavior and improve HRQOL. Another framework that may be used to guide future research is the Roy Adaptation Model. This conceptual model depicts individuals as bio-psychosocial beings who adapt physically, psychologically, functionally, and socially to ever-changing environmental stimuli.68 Linkages can easily be made between the modes of adaptation and variables in each domain of HRQOL, as well as between environmental stimuli and variables such as age, gender, race, education, type of treatment, and stage of disease.68
The findings of this review uncovered numerous methodological issues that need to be resolved, including using more rigorous study designs and standardizing the measurement of each HRQOL domain. Most studies reviewed were correlational and cross-sectional; just 4 (11%) of the studies in this review used longitudinal designs. Murdaugh69 pointed out that HRQOL is a dynamic and nonstatic construct that cannot accurately reflect the impact of illness at one point in time, highlighting the need for longitudinal, prospective study designs.
As can be seen in Table 1, more than 29 different instruments were used to measure the various domains of HRQOL. Measurement approaches used in the studies included a single instrument or a battery of different instruments. The 2 most commonly used single questionnaires measuring HRQOL domains are the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 and the Medical Outcomes Study Short Form 36 (Table 2). The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 was used exclusively in European studies (n = 6) to measure the multidimensional construct of HRQOL. This instrument is a cancer-specific measure; subscales measure physical, emotional, cognitive, and social functioning, as well as global health status.70 Short Form 36, in contrast, is a generic measure that enables comparison across various diseases. This instrument was used in 7 studies, most of which were conducted in Europe.8,15,26,30,35,39,41 The use of a brief, single, and concise instrument to measure HRQOL would aid in reducing respondent burden, especially given the high incidence of fatigue experienced by HD survivors. In addition, the uniform adoption of a single instrument for measuring HRQOL would allow for direct comparison of findings across studies and contribute to the advancement of knowledge.
Researchers rarely reported categorization of study participants' race, which may be related to the low incidence of HD in nonwhite persons. Yet in 2005, HD incidence rates were similar in African American and white, non-Hispanic populations.71 Only 8 (23%) US studies in this review included descriptions of participant racial/ethnic identity. Zabora et al21 reported that a sample of 680 African American cancer survivors, as well as those of lower socioeconomic status, experienced greater distress than did cancer survivors of other races. Addressing HRQOL in culturally diverse populations cannot be ignored, as evidence suggests that certain groups may be at risk for decreased HRQOL.
Although cure rates and survival statistics for patients with HD have improved dramatically in the last decade, curative treatments have been implicated in the multiple medical sequelae that occur after treatment, including second malignancies, cardiac and pulmonary disease, and other late effects such as infection and endocrine disorders.45 Because HD survivors have had an excellent prognosis for disease-free survival, this population can be used as a model for investigating the HRQOL of cancer patients transitioning to survivorship. Implementation of innovative programs that will improve survivors' adjustment and gradual return to previous levels of functioning should be a priority. The results of this systematic review suggest that there is a growing body of literature that describes the HRQOL problems that occur after treatment for HD. Gaps in the literature identified through this review include the lack of longitudinal studies and explicit theoretical frameworks, inconsistent measurement of HRQOL, and exclusion of minority groups in study samples. Consensus about standardized HRQOL instruments would enable researchers to compare findings across studies. As the evidence related to HRQOL in HD survivors grows, development and testing of theory-guided interventions are needed to improve the transition from acute care and enhance the long-term goal of the highest possible HRQOL.
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Keywords:© 2009 Lippincott Williams & Wilkins, Inc.
Health-related quality of life; Hodgkin's disease; Quality of life; Survivor