Oral symptom intensity, health-related quality of life, and correlative salivary cytokines in adult survivors of hematopoietic stem cell transplantation with oral chronic graft-versus-host disease.

Oral chronic graft-versus-host disease (cGVHD) is a frequent, clinically significant sequela of allogeneic hematopoietic stem cell transplantation (HSCT). This study was designed to elucidate relationships among clinical characteristics of oral cGVHD and related oral pain and oral dryness, salivary proinflammatory cytokine interleukin (IL)-6 and IL-1alpha concentrations, and health-related quality of life (HRQL). An understanding of the characteristics and correlates of oral cGVHD manifestations and related symptoms, such as oral dryness, is fundamental to the development of therapeutic interventions. Oral cGVHD severity was assessed with the Oral Mucositis Rating Scale (OMRS). Oral pain and perceived intensity of oral dryness were self-reported via a visual analog scale and a numeric rating scale, respectively. HRQL was assessed with the Functional Assessment of Cancer Therapy-General (FACT-G). Salivary IL-1alpha and IL-6 concentrations were measured by enzyme-linked immunosorbent assay. All 42 adult subjects (59% males) had clinician-assessed oral cGVHD by the OMRS scale (mean score, 18.38 +/- 12.99; range, 2-46). Oral dryness (in 43% of subjects; mean OMRS score, 2.56 +/- 3.45; range, 0-10) was more prevalent than oral pain (8%; mean score, 0.13 +/- 0.47). Salivary IL-6 was associated with oral cGVHD severity (r = 0.49; P < .01), oral ulceration (r = 0.38; P = .04), and erythema (r = 0.63; P < .01). FACT-G total score and physical and emotional well-being subscale scores were meaningfully lower than U.S. population normative values. Participants with more severe oral cGVHD manifestations had significantly inferior social/family well being (r = -0.49; P < .01). Oral dryness was associated with higher salivary IL-1alpha (r = 0.41; P = .04) and, controlling for cGVHD severity, with lower HRQL (r = -0.41; P = .03). Subjects with moderate to severe oral dryness tended to report the poorest overall HRQL. This study provides preliminary evidence of the relationship between oral dryness and HRQL, the contribution of oral cGVHD to inferior HRQL, and the association between IL-6 and oral cGVHD severity, ulceration, and erythema. The high prevalence of oral dryness and its relationship to HRQL in a sample of subjects with oral cGVHD underscores the importance of improving our evaluation and management of this symptom in long-term survivors of allogeneic HSCT. The positive associations between IL-6 and oral cGVHD severity and erythema, as well as the positive trend with oral ulceration, warrant further exploration of this cytokine as a potential biomarker of active oral cGVHD.

The symptom experience in the first 100 days following allogeneic hematopoietic stem cell transplantation (HSCT).

GOALS OF WORK: Despite advances in allogeneic hematopoietic stem cell transplantation (HSCT), post-transplant complications are common, and patients' symptom experience has not been well documented. PURPOSE: To characterize the symptom experience of adult patients pre-transplantation and days 0, 30, and 100 after allogeneic HSCT. METHODS: Data from 76 participants enrolled in a prospective health-related quality of life (HRQL) study were used. Symptom occurrence, distress, and clusters were determined based on the 11 symptoms of the Symptom Distress Scale (SDS). RESULTS: Participants were on average 40 years old (SD +/- 13.5). The majority (54%) received reduced intensity conditioning. Prevalent symptoms included fatigue (68%) and worry (68%) at baseline, appetite change (88%) at day 0, and fatigue at days 30 (90%) and 100 (81%). Participants reported the following symptoms as severely distressing: worry (16%) [baseline], insomnia (32%) [day 0], appetite change (22%) [day 30], and fatigue (11%) [day 100]. The total SDS score was highest at day 0 (M = 26.6 +/- 7.6) when the highest number of symptoms were reported [median = 8 (1-11)]. Symptoms formed clusters comprised of fatigue, appearance change, and worry at baseline, and fatigue, insomnia, and bowel changes at days 0 and 30. Compared to those with low symptom distress, participants with moderate/severe symptom distress reported poorer HRQL. CONCLUSION: Allogeneic HSCT patients present for transplantation with low symptom distress yet experience multiple symptoms and high symptom distress after HSCT conditioning. Understanding the symptom experience of allogeneic HSCT patients can guide management strategies and improve HRQL.

Effect of long-cycle structured intermittent versus continuous HAART on quality of life in patients with chronic HIV infection.

OBJECTIVE: To examine the effect of repeated, long-cycle structured intermittent versus continuous HAART on health-related quality of life (HRQL) and symptom distress in patients with chronic HIV infection and plasma HIV RNA of less than 50 copies/ml. DESIGN: Prospective survey of adult patients (n = 46) enrolled in a randomized clinical trial evaluating intermittent versus continuous HAART on immunological and virologic parameters. Patients (n = 23) randomized to structured intermittent therapy received serial cycles of 4 weeks on/8 weeks off HAART. OUTCOME MEASURES: HRQL was measured by the physical and mental health summary scores of the Medical Outcomes Study HIV Health Survey (MOS-HIV). Symptom distress was measured by the Symptom Distress Scale. Patients completed initial questionnaires prior to randomization and at weeks 4, 12, and 40 of the trial via a touch screen computer in an outpatient clinic. RESULTS: Baseline demographic and clinical characteristics were equivalent in both treatment groups. Although the mental health summary score declined significantly over time for the structured intermittent group, linear mixed modeling ANOVA indicated no significant difference across time for MOS-HIV summary and Symptom Distress Scale scores between the two treatment arms. CONCLUSION: In this small sample, repeated long-cycle structured intermittent therapy may not provide HRQL or symptom distress advantage compared to continuous HAART in patients with chronic HIV infection over 10 months of treatment. Further research in a heterogenous chronic HIV population and longer follow-up period is warranted.

Technology dependence and health-related quality of life: a model.

AIM: This paper presents a new theoretical model to explain people's diverse responses to therapeutic health technology by characterizing the relationship between technology dependence and health-related quality of life (HRQL). INTRODUCTION: Technology dependence has been defined as reliance on a variety of devices, drugs and procedures to alleviate or remedy acute or chronic health problems. Health professionals must ensure that these technologies result in positive outcomes for those who must rely on them, while minimizing the potential for unintended consequences. Little research exists to inform health professionals about how dependency on therapeutic technology may affect patient-reported outcomes such as HRQL. Organizing frameworks to focus such research are also limited. MODEL: Generated from the synthesis of three theoretical frameworks and empirical research, the model proposes that attitudes towards technology dependence affect HRQL through a person's illness representations or commonsense beliefs about their illness. Symptom distress, illness history, age and gender also influence the technology dependence and HRQL relationship. Five concepts form the major components of the model: a) attitudes towards technology dependence, b) illness representation, c) symptom distress, d) HRQL and e) illness history. CONCLUSION: The model is proposed as a guide for clinical nursing research into the impact of a wide variety of therapeutic health care interventions on HRQL. Empirical validation of the model is needed to test its generality.