The partner's perspective of the impact of pituitary disease: Looking beyond the patient.

People with pituitary disease report impairments in quality of life. The aim of this study was to elucidate the impact of the pituitary condition on the lives of partners. Four focus groups of partners of people with pituitary disease (Cushing's disease, non-functioning adenoma, acromegaly, prolactinoma) were conducted. Partners mentioned worries related to the pituitary disease and negative beliefs about medication, coping challenges, relationship issues, social issues and unmet needs regarding care. This study emphasizes the importance of not only paying attention to psychosocial well-being of people with pituitary disease but also to their partners.

The Impact of Illness Perceptions and Coping on the Association Between Back Pain and Health Outcomes in Patients Suspected of Having Axial Spondyloarthritis: Data From the SPondyloArthritis Caught Early Cohort.

OBJECTIVE: To investigate whether illness perceptions and coping influence the relationship between back pain and health outcomes in patients suspected of having axial spondyloarthritis (SpA). METHODS: In the SPondyloArthritis Caught Early cohort, regression models were computed at baseline, with back pain intensity (range 0-10) as the determinant and health-related quality of life, the physical component summary score (PCS) and mental component summary (MCS) of the Short Form 36 (SF-36) health survey, or work productivity loss as outcomes. Subsequently, using Leventhal's Common-Sense Model of Self-Regulation, illness perceptions and, thereafter, coping were added to the models. Analyses were repeated for patients diagnosed and classified as having axial SpA according to the Assessment of SpondyloArthritis international Society axial SpA criteria (ASAS axial SpA), patients only diagnosed with axial SpA (axial SpA-diagnosed only), and those with chronic back pain. RESULTS: A total of 424 patients (145 with ASAS axial SpA, 81 with only a diagnosis of axial SpA, and 198 with chronic back pain); 64% of the total group were female, the mean ± SD age was 30.9 ± 8.1 years, and the mean ± SD symptom duration was 13.3 ± 7.1 months) were studied. In all patients, the strength of the associations between back pain and the PCS, back pain and the MCS score, and back pain and loss of work productivity were decreased by adding illness perceptions to the model, but explained variance improved. Adding coping to these models did not change the results. Comparable results were observed in all subgroups. CONCLUSION: Illness perception, but not coping, is important in the relationship between back pain and HRQoL and work productivity loss in patients suspected of having axial SpA, irrespective of subgroup. This finding suggests that targeting illness perceptions could improve health outcomes in patients suspected of having axial SpA.

Smokers' identity and quit advice in general practice: General practitioners need to focus more on female smokers.

OBJECTIVE: We examined smoker and non-smoker self-identities among smokers visiting their general practitioner (GP) for other reasons than smoking cessation counselling. We determined whether identity impacted on patients' appreciation of GP-initiated conversations about smoking and quit advice, and subsequent quit attempts, and examined the role of gender. METHODS: Secondary analyses of a cluster-randomised controlled trial in which baseline and 12-month follow-up data were collected among 527 daily (n=450) and non-daily smokers (n=77). RESULTS: Participants identified more with smoking than non-smoking. Participants with stronger non-smoker self-identities were more often female, appreciated the conversation about smoking more, were more likely to receive quit-advice and to have attempted to quit at 12-month follow-up. Participants with stronger smoker self-identities were also more often female, and appreciated the conversation more. Men with stronger non-smoker self-identities were more often asked about smoking and advised to quit, and appreciated the conversation more than women. CONCLUSION: Non-smoker identity was more important for receiving quit-advice, appreciation, and quit attempts than smoker identity. Future research needs to unravel why female smokers appreciated the conversation less than male smokers. PRACTICE IMPLICATIONS: We suggest to incorporate an identity-component in smoking cessation interventions. GPs should increase their focus on female patients who smoke.

The development and validation of the Leiden Bother and Needs Questionnaire for patients with pituitary disease: the LBNQ-Pituitary.

BACKGROUND: Patients report persisting impairment in quality of life (QoL) after treatment for pituitary disease. At present, there is no questionnaire to assess (a) whether patients with pituitary disease are bothered by these consequences, and (b) their needs for support. OBJECTIVE: To develop and validate a disease-specific questionnaire for patients with pituitary disease which incorporates patient perceived bother related to the consequences of the disease, and their needs for support. METHODS: Items for the Leiden Bother and Needs Questionnaire for patients with pituitary disease (LBNQ-Pituitary) were formulated based on results of a recent focus group study (n = 49 items). 337 patients completed the LBNQ-Pituitary and six validated QoL questionnaires (EuroQoL-5D, SF-36, MFI-20, HADS, AcroQol, CushingQoL). Construct validity was examined by exploratory factor analysis. Reliabilities of the subscales were calculated with Cronbach's alphas, and concurrent validity was assessed by calculating Spearman's correlations between the LBNQ-Pituitary and the other measures. RESULTS: Factor analyses produced five subscales (i.e., mood problems, negative illness perceptions, issues in sexual functioning, physical and cognitive complaints, issues in social functioning) containing a total of 26 items. All factors were found to be reliable (Cronbach's alphas all ≥.765), and the correlations between the dimensions of the LBNQ-Pituitary and other questionnaires (all P ≤ .0001) demonstrated convergent validity. CONCLUSIONS: The LBNQ-Pituitary can be used to assess the degree to which patients are bothered by the consequences of the pituitary disease, as well as their needs for support. It could also facilitate an efficient assessment of patients' needs for support in clinical practice. We postulate that paying attention to needs for support will lead to optimal patient care (e.g., improvement in psychosocial care), and positively affect QoL.

Quality of life (QoL) impairments in patients with a pituitary adenoma: a systematic review of QoL studies.

PURPOSE: Pituitary adenomas give rise to physical and psychological symptoms, which may persist after biochemical cure. Growing attention has been paid to quality of life (QoL) in these patients. We aimed to systematically analyze QoL assessment methods and QoL outcome in these patients. METHODS: We conducted a systematic literature search up to January 2014 in PubMed, Web of Knowledge, PsycInfo and EMBASE. RESULTS: 102 papers assessing QoL in patients with a pituitary adenoma were included. In clinical (original) studies in which QoL was the primary outcome parameter (n = 54), 19 studies combined a generic questionnaire with a disease-specific questionnaire. QoL was found to be impaired in patients with active disease relative to controls, and generally improved during biochemical cure. However, no normalization occurred, with patients with remitted Cushing's disease demonstrating the smallest improvement. Somatic factors (e.g., hypopituitarism, sleep characteristics), psychological factors (illness perceptions) and health care environment (rural vs. urban) were identified as influencing factors. Intervention studies (predominantly evaluating medical interventions) have been found to improve QoL. CONCLUSIONS: The growing number of studies assessing QoL generally described the negative impact of pituitary adenomas. QoL research in this patient group could be further elaborated by the development of disease-specific questionnaires for prolactinoma and non-functioning adenoma, consequent use of generic and disease-specific questionnaires and using a long-term (longitudinal) follow-up. Surgical and pharmacological interventions improve but not normalize QoL. We postulate that there might be margin for further improvement of QoL, for instance by using psychosocial interventions, in addition to optimal medical treatment.

Back/joint pain, illness perceptions and coping are important predictors of quality of life and work productivity in patients with inflammatory bowel disease: a 12-month longitudinal study.

BACKGROUND AND AIMS: Back and joint pain are the most common extraintestinal symptoms reported by patients with inflammatory bowel disease (IBD). We assessed the impact of back/joint pain, illness perceptions, and coping on quality of life (QOL) and work productivity in patients with IBD. METHODS: Our cohort included 155 IBD patients with and 100 without arthropathy. Arthropathy was defined as daily back pain for ≥3 months and/or peripheral joint pain and/or joint swelling over the last year. At baseline and at 12 months, patients completed questionnaires on the extent of back/joint pain, IBD disease activity, illness perceptions, coping, QOL, and work productivity. The impact of back/joint pain, illness perceptions and coping on QOL and work productivity was determined, using linear mixed models. RESULTS: In total, 204 IBD patients (72% Crohn's disease, 40% male, mean age 44 ± 14 years) completed questionnaires at both time points. At both time points, IBD patients with back/joint pain reported a significantly lower QOL and work productivity compared with IBD patients without back/joint pain. Predictors of low QOL were back/joint pain (ß = -1.04, 95% confidence interval [CI] -1.40, -0.68), stronger beliefs about the illness consequences (ß = -0.39, 95% CI -0.59, -0.18) and emotional impact of IBD (ß = -0.47, 95% CI -0.66, -0.28), and the coping strategy 'decreasing activity' (ß = -0.26, 95% CI -0.48, -0.03). Predictors of work productivity were back/joint pain (ß = 0.22, 95% CI 0.07, 0.37) and illness consequences (ß = 0.14, 95% CI 0.06, 0.22). CONCLUSION: Back/joint pain, illness perceptions, and coping are significant predictors of QOL and work productivity, after controlling for disease activity.

Towards a better quality of life (QoL) for patients with pituitary diseases: results from a focus group study exploring QoL.

PURPOSE: Patients treated for pituitary adenomas generally report a reduced quality of life (QoL). At present, the patient's perspective of QoL has not been fully addressed and this, and further insight in potential determinants of QoL in pituitary diseases is required to design strategies to improve QoL. We aimed to define patients' perceived QoL and to identify potential factors they perceive to contribute to QoL. METHODS: We conducted four independent focus groups of six patients each, per specific pituitary disease (Cushing's disease, Non-functioning pituitary macroadenoma, acromegaly, prolactinoma). In two sessions these focus groups discussed aspects of QoL. Verbatim transcripts were analyzed using a grounded theory approach. RESULTS: The issues raised by the patient groups were compatible with statements and items of available QoL questionnaires. In addition, other QoL aspects emerged, such as visual limitations (physical problems); issues with a desire to have children/family planning, fear of collapsing, fear of recurrence, panic, persisting thoughts, problems with an altered personality, anger, jealousy, sadness, frustration (psychological problems); and difficulties communicating about the disease, lack of sympathy and understanding by others, and a reduced social network (social problems). Next, this study uncovered factors which might contribute to a decreased QoL (e.g. less effective coping strategies, negative illness perceptions, negative beliefs about medicines, unmet needs regarding care). CONCLUSIONS: This focus group study demonstrated that important disease-specific aspects of QoL are neglected in current pituitary disease-specific questionnaires and elucidated potential factors that contribute to a decreased QoL. Information provided in this study can (and will) be used for developing additional items for disease-specific QoL questionnaires and for the development of a self-management intervention aiming to improve QoL in patients treated for pituitary diseases.

Use of action planning to increase provision of smoking cessation care by general practitioners: role of plan specificity and enactment.

BACKGROUND: Strategies are needed to help general practitioners (GPs) promote smoking cessation as recommended by guidelines. This study examines whether the quality of action planning among GPs improves their provision of smoking cessation care. METHODS: The effectiveness of a 1-h training programme was examined in a cluster randomised controlled trial in which 49 GPs participated. GPs who followed the training (intervention group; n = 25) formulated action plans related to i) enquiring about smoking, ii) advising to quit smoking, and iii) arranging follow-up for smokers motivated to quit. GPs also formulated a coping plan for encountering smokers not motivated to quit. The quality of these plans (plan specificity) was rated and, 6 weeks after the training, GPs reported on the performance of these plans (plan enactment). Multilevel regression analyses were used to examine the effects of plan specificity and plan enactment on patient-reported smoking cessation activities of the GPs in the intervention group (n = 1,632 patients) compared with the control group (n = 1,769 patients). RESULTS: Compared to the control group, GPs who formulated a highly specific action plan during the training asked their patients about smoking more often after the training compared to prior to the training (OR 2.11, 95% CI 1.51-2.95). GPs were most likely to have asked patients about smoking after the training compared to prior to the training when they had enacted a highly specific formulated action plan (OR 3.08, 95% CI 2.04-4.64). The effects of GP plan specificity and plan enactment on asking patient about smoking were most prominent among GPs who, at baseline, intended to provide smoking cessation care. CONCLUSIONS: A highly specific action plan formulated by a GP on when, how, and by whom patients will be asked about smoking had a positive effect on GPs' asking patients about smoking, especially when these professionals also reported to have enacted this plan. This effect was most prominent among GPs who intended to provide smoking cessation care prior to the intervention. Training in devising personalised coping plans is recommended to further increase GPs' provision of advice to quit smoking and arranging follow-up support to quit smoking.

Sequence-analysis of video-recorded practitioner-patient communication about smoking in general practice: do smokers express negative statements about quitting?

OBJECTIVE: To examine the extent to which smokers express negative statements about quitting and the extent to which these statements influence general practitioners' (GPs') and practice nurses' (PNs') (dis)continuation of guideline-recommended smoking cessation care. METHODS: Fifty-two video-consultations were observed (GP-consultations: 2007-2008; PN-consultations: 2010-2011). Dialogues were transcribed verbatim and professionals' and patients' speech units were coded and analysed using sequential analyses (n=1424 speech units). RESULTS: GPs focused on asking about smoking (GPs: 42.4% versus PNs: 26.2%, p=0.011) and advising them to quit (GPs: 15.3% versus PNs: 3.5%, p<0.001), whereas PNs focused on assisting them with quitting (GPs: 25.4% versus PNs: 55.2%, p<0.001). Overall, patients expressed more negative statements about quitting than positive statements (negative: 25.3% versus positive: 11.9%, p<0.001), especially when PNs assessed their willingness to quit (OR 3.61, 95% CI 1.44-9.01) or assisted them with quitting (OR 2.23, 95% CI 1.43-3.48). PRACTICE IMPLICATIONS: An alternative approach to smoking cessation care is proposed in which GPs' tasks are limited to asking, advising, and arranging follow-up. This approach seems the least likely to evoke negative statements of patients about quitting during dialogues with GPs and is compatible with the tasks and skills of PNs who could, subsequently, assist smokers with quitting.

Self-management in patients with COPD: theoretical context, content, outcomes, and integration into clinical care.

In this narrative review, we put self-management in the context of a 50-year history of research about how patients with COPD respond to their illness. We review a definition of self-management, and emphasize that self-management should be combined with disease management and the chronic care model in order to be effective. Reviewing the empirical status of self-management in COPD, we conclude that self-management is part and parcel of modern, patient-oriented biopsychosocial care. In pulmonary rehabilitation programs, self-management is instrumental in improving patients' functional status and quality of life. We conclude by emphasizing how studying the way persons with COPD make sense of their illness helps in refining self-management, and thereby patient-reported outcomes in COPD.

One-hour training for general practitioners in reducing the implementation gap of smoking cessation care: a cluster-randomized controlled trial.

INTRODUCTION: This study examined the effectiveness of low-intensity, practice-tailored training for general practitioners (GPs) aimed at personal and organizational barriers that arise when routinely asking patients' smoking status, advising to quit, and arranging follow-up. METHODS: A cluster-randomized controlled trial with 49 GPs and 3,401 patients (677 smokers). Two patient groups participated: 2,068 patients (433 smokers) at baseline and 1,333 patients (244 smokers) postintervention. At follow-up, 225 smokers of both groups participated. The primary outcome was GP smoking cessation counseling (asking about smoking status, advising to quit, prescribing pharmacotherapy, and referring for behavioral support). Secondary outcomes were GPs' attitudes toward smoking cessation care, patients' intention to quit, and long-term quit rates. Outcomes were measured with GP self-report and patient report. RESULTS: Patients of trained GPs reported more often being asked about smoking behavior compared with patients of untrained GPs (OR = 1.94, 95% CI = 1.45-2.60). According to GP self-report, the training increased the provision of quit-smoking advices (difference 0.56 advice per day; 95% CI = 0.13-0.98) and the ability and intention of providing smoking cessation care. We found no effect on GPs' arrangement of follow-up, smokers' intention to quit, and long-term quit rates. CONCLUSIONS: After 1 hour of training, we found significant differences between trained and untrained GPs on the frequency in which they asked about smoking (patient reported) and advised smokers to quit (GP self-reported). The training did not increase prescriptions of pharmacotherapy, referrals to behavioral support, or quit rates. Future training methods should focus on the GPs' ability, tools, and skills to arrange follow-up to ensure intensive smoking cessation support.

Illness representations as mediators of the relationship between dispositional optimism and depression in patients with chronic tinnitus: a cross-sectional study.

OBJECTIVE: Both dispositional optimism and illness representations are related to psychological health in chronic patients. In a group of chronic tinnitus sufferers, the interplay between these two variables was examined. Specifically, it was tested to what extent the relationship between dispositional optimism and depression is mediated by more positive illness representations. METHOD: The study had a cross-sectional design. One hundred and eighteen patients diagnosed with chronic tinnitus completed questionnaires assessing optimism (Life Orientation Test-Revised [LOT-R]), illness representations (Illness Perceptions Questionnaire-Revised [IPQ-R]) and depression (Hospital Anxiety and Depression Scale [HADS]). RESULTS: Correlation analysis showed that optimism was associated with more positive illness representations and lower levels of depression. Simple mediation analyses revealed that the relationship between optimism and depression was partially mediated by the illness representation dimensions consequences, treatment control, coherence, emotional representations and internal causes. A multiple mediation analysis indicated that the total mediation effect of illness representations is particularly due to the dimension consequences. CONCLUSION: Optimism influences depression in tinnitus patients both directly and indirectly. The indirect effect indicates that optimism is associated with more positive tinnitus-specific illness representations which, in turn, are related to less depression. These findings contribute to a better understanding of the interplay between generalised expectancies, illness-specific perceptions and psychological adjustment to medical conditions.

Perceived discomfort levels in healthy children participating in vaccine research.

When assessing the risks of a research protocol, review boards need to consider not only the possible harms but also the expected discomfort levels caused by the various study procedures. However, data on how children experience various study procedures are scarce. This study assessed perceived discomfort levels in 671 healthy children aged 0-2 years under-going vaccinations, venipunctures, and nasopharyngeal swab taking. In half of the study participants, venipunctures caused a moderate or high level of discomfort (49%). Corresponding figures for nasopharyngeal swabbing and vaccinations were 28% and 12%, respectively. Within the reported age group, increasing age was related with higher discomfort levels. In a majority of cases for all study procedures, the perceived levels of discomfort met the parents' expectations.

When the ringing in the ears gets unbearable: Illness representations, self-instructions and adjustment to tinnitus.

OBJECTIVE: Chronic tinnitus can severely impair a person's quality of life. The degree of impairment, however, is not closely related to tinnitus loudness. Applying the common sense model (CSM) of self-regulation of health and illness, this study investigated to what extent psychological factors, i.e. illness representations and positive/negative self-instructions, are associated with the degree of tinnitus-related complaints. METHODS: In this cross-sectional study, 118 patients diagnosed with chronic tinnitus filled in questionnaires assessing illness representations (IPQ-R), positive and negative self-instructions (TRSS), and tinnitus-related complaints (TQ). RESULTS: The regression analysis yielded a number of significant associations between illness representations and tinnitus-related complaints, particularly for the IPQ-R dimensions identity, consequences, coherence, and emotional representations. With regard to self-instructions and tinnitus-related complaints, significant effects were found only for negative self-instructions. Moreover, multiple mediation analyses revealed that the effects of consequences and emotional representations on tinnitus-related complaints were (partially) due to the use of negative self-instructions. CONCLUSION: Psychological factors are strongly related to the extent of tinnitus-related complaints. The findings provide an indication of which aspects should be targeted in psychological and psychotherapeutic tinnitus treatment.

Concerns about exercise are related to walk test results in pulmonary rehabilitation for patients with COPD.

BACKGROUND: Although international guidelines on pulmonary rehabilitation acknowledge that psychological factors contribute to exercise intolerance in patients with chronic obstructive pulmonary disease (COPD), the few empirical studies investigating this association have found inconsistent results. PURPOSE: The purpose of this study is to investigate whether negative affect and beliefs about exercise of patients with COPD would be related to baseline 6-min walk (6-MW) test results in a pulmonary rehabilitation setting, after correction for physical variables (sex, age, height, weight, and lung function). A second aim was to examine whether patients' beliefs are associated with treatment outcomes, as measured by an improvement in 6-MW distance. METHOD: A 12-week pulmonary rehabilitation program was completed by 166 patients. Beliefs (perceived necessity and concerns) about exercise and negative affect were assessed by a questionnaire. Clinical data were obtained from medical records. RESULTS: Baseline 6-MW distance was positively related to younger age, male gender, better pulmonary function, and having fewer concerns about exercise. After rehabilitation, patients had increased their walk distance by 12% (32 m), on average. Baseline physiological and psychological variables were unrelated to patients' response to treatment (increase in walk distance). However, subgroup analysis showed that for patients with mild to moderate airflow obstruction, concerns about exercise were negatively related to response to treatment. CONCLUSION: We conclude that patients' beliefs about the negative consequences of exercise are associated with baseline 6-MW test performance and response to treatment for patients with mild to moderate COPD. We recommend that patients' concerns about exercise are discussed and, if necessary, corrected during the intake phase.

The dynamics of illness perceptions: testing assumptions of Leventhal's common-sense model in a pulmonary rehabilitation setting.

OBJECTIVES: Although Leventhal's common-sense model (CSM) is proposed to represent a dynamic system, limited research has been conducted to investigate whether and how illness perceptions change. This study tested two hypotheses from the CSM about the dynamics of illness perceptions of patients with chronic obstructive pulmonary disease (COPD) in a pulmonary rehabilitation setting. DESIGN AND METHODS: The study employed a longitudinal design. Patients with COPD (N=87) who took part in a pulmonary rehabilitation programme filled out the Illness Perception Questionnaire - Revised (IPQ-R) before and after treatment and rated the degree to which the rehabilitation had led to the achievement of desired outcomes. Clinical variables and quality of life (Chronic Respiratory Disease Questionnaire) data were obtained from medical records. RESULTS: In line with expectations, results showed that, at baseline, longer time since diagnosis was associated to perceptions corresponding with a chronic illness model (longer illness duration, more experienced consequences, less perceived personal controllability), after correction for clinical variables. After completion of the rehabilitation programme, patients who were more convinced that their participation had led to the achievement of desired outcomes were less concerned about the negative consequences of COPD, had stronger perceptions about the variability in symptoms (cyclical timeline) and had stronger perceptions of personal controllability Conclusions: We conclude that, in accordance with Leventhal et al.'s CSM, coping with an illness is a continuous process and the achievement of desired outcomes during treatment is likely to enable patients to adopt a more positive representation of their illness.

Illness representations of depression and perceptions of the helpfulness of social support: comparing depressed and never-depressed persons.

BACKGROUND: Interactions between depressed persons and persons within their social network are often characterized by misunderstanding and unsuccessful social support attempts. These interpersonal problems could be fostered by discrepancies between depressed and never-depressed persons' illness representations of depression and/or discrepancies in the perceived helpfulness of supportive behaviors. METHODS: Illness representations of depression (IPQ-R) and perceptions of the helpfulness of different social support behaviors (ISU-DYA and ISAD) were assessed in 41 currently depressed persons and 58 persons without a history of depression. RESULTS: Never-depressed persons perceived depression as more controllable by treatment and as less emotionally impairing than depressed persons, but also as having more severe consequences. Never-depressed persons considered activation-oriented support (motivation to approach problems) as more helpful and protection-oriented support (allowance to draw back) as less helpful in comparison to depressed persons. LIMITATION: Data were collected in unrelated samples of depressed and never-depressed persons. CONCLUSIONS: Discrepancies in illness representations and perceptions of the helpfulness of social support do exist and may be the origin of problematic social interactions between depressed patients and persons within their social network. Therapeutic interventions should address the issue of conflicting perceptions and encourage depressed patients to acknowledge and discuss this topic within their social network.

Using the common sense model of illness perceptions to examine osteoarthritis change: a 6-year longitudinal study.

OBJECTIVE: To examine the association between changes in common sense models and changes in functional status over a 6-year follow-up in patients with osteoarthritis. DESIGN: At baseline and follow-up, osteoarthritis outpatients (N = 241) recruited from a university medical center completed the Illness Perception Questionnaire-Revised (IPQ-R), the Australian/Canadian Osteoarthritis Hand Index, and the Western Ontario and McMasters Universities Osteoarthritis Index. Also, their physician-assessed pain intensity, and biomedical, and clinical measures of medical severity of osteoarthritis were recorded. MAIN OUTCOME MEASURES: Functional disability, pain intensity. RESULTS: Over 6 years, functional disability and pain intensity increased. The IPQ-R dimensions of timeline, personal control, and illness coherence became more negative, and emotional representations became less negative (i.e., more accepting). Patients identified as sharing a similar profile of negative changes on the IPQ-R had significantly worse functioning on 2 of 3 outcomes, independent of objectively measured osteoarthritis severity. CONCLUSIONS: Changes in illness perceptions were associated with changes in outcomes. Interventions to prevent increasingly negative patterns of illness perceptions over time, with an emphasis on strengthening control cognitions, may benefit functional status outcomes in patients with osteoarthritis.

Illness cognitions in head and neck squamous cell carcinoma: predicting quality of life outcome.

GOALS OF WORK: This paper presents an observational study of the longitudinal effects of cancer treatment on quality of life (QoL) in patients treated for head and neck squamous cell carcinoma (HNSCC), and evaluated the contribution of patients' baseline illness cognitions to the prediction of QoL 2 years after diagnosis. PATIENTS AND METHODS: One hundred seventy-seven patients eligible for primary treatment for HNSCC completed the Illness Perception Questionnaire-Revised at baseline and the European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire-30 at baseline, at 1-year and 2-year follow-ups. MAIN RESULTS: Compared to baseline, patients reported better emotional functioning at both follow-ups (p < 0.001), worse social functioning at 12 months (p < 0.05), and better global health status at 24 months (p < 0.05). Patients' own implicit common sense beliefs about their illness added small but significant amounts of variance to the prediction of QoL after 2 years. Less belief in own behavior causing the illness predicted better functioning and better global health. Strong illness identity beliefs predicted worse functioning and worse global health. Negative perceptions about the duration of the illness (chronic timeline beliefs) and more negative perceived consequences also predicted worse QoL. CONCLUSIONS: Our results on the negative perceptions about the duration of the illness, perceived consequences, and high symptom awareness predicting worse QoL illustrate the detrimental effects of uncertainty and negative expectations about the future course of the illness. The identification of these cognitive factors provides possible targets for counseling strategies to assist patients in long-term adjustment to HNSCC.

Drop-out and attendance in pulmonary rehabilitation: the role of clinical and psychosocial variables.

BACKGROUND: In spite of the well-demonstrated benefits for patients with COPD, pulmonary rehabilitation programmes show considerable drop-out and suboptimal attendance rates. The purpose of this prospective study is to examine causes for drop-out and non-attendance during a 12 week multidisciplinary pulmonary rehabilitation programme, and to investigate whether sociodemographic and medical factors as well as patients' perception of their illness are related to drop-out and non-attendance. METHODS: Two hundred and seventeen patients with COPD who were referred to a rehabilitation centre participated in this multicentre study. Prior to treatment, patients received a questionnaire, which included the Illness Perception Questionnaire-Revised. Clinical data were drawn from medical records. Drop-out and attendance were recorded during the programme. RESULTS: Fifty patients (23%) did not complete the rehabilitation course, of which half was due to medical reasons (e.g. exacerbations, hospitalisations). Non-completion could not be predicted by baseline sociodemographic, clinical or psychological variables. Patients who declined treatment did not differ from patients who dropped out due to medical reasons. On average, patients attended 92% of all scheduled appointments. Of all missed appointments, approximately 20% were accountable to factors beyond patients' control (e.g. absent therapists, hospitalisations). Smoking, living alone, a lower fat free mass and lower confidence in treatment increased the chance of patients not attending an appointment during rehabilitation. CONCLUSION: In general, adherence in rehabilitation is high. However, paying attention to patients' nutritional status and creating a positive expectation of treatment during referral and intake appear to be important if one aims to optimise patients' attendance during rehabilitation.