The efficacy of oral corticoids in treating complex regional pain syndrome: A retrospective cohort study.

OBJECTIVES: There is growing evidence supporting the role of inflammatory mechanisms in complex regional pain syndrome (CRPS). Corticoids, as most effective anti-inflammatory drugs, are widely used in treating inflammation. The aim of this study was to retrospectively assess the efficacy of oral corticoid treatment in CRPS patients. METHODS: Patients treated at the center of pain medicine in the Erasmus University Medical Centre between January 2015 and January 2020 were approached to partake in this study. Medical records were screened for age, gender, medical history, duration of CRPS, and CRPS severity score. Also, treatment effect, dose and duration, pain scores (NRS), and side effects were extracted from medical records. In addition, global perceived effect was completed in patients treated with corticoids. RESULTS: Between January 2015 and January 2020, twenty-nine CRPS patients received corticoids and met the inclusion criteria. One extreme outlier was excluded and treatment effect was unknown for one patient. Average daily dose was 28.9 mg (range 10-30 mg) and the mean treatment duration was 10.5 days (7-21 days). Fourteen patients (51.9%) responded positively to treatment and thirteen (48.1%) did not respond. Side effects were reported in five patients (17.9%). CONCLUSIONS: Corticoid treatment was effective in more than half of the patients. With only mild side effects reported the treatment also appears to be relatively safe. Further research is needed to investigate the efficacy of corticoids in treating (early) CRPS, preferably in an intervention study.

Dutch Consensus Paper: A Consensus View on the Place of Neurostimulation Within the Treatment Arsenal of Five Reimbursed Indications for Neurostimulation in The Netherlands.

INTRODUCTION: After an interpretation trajectory, the Dutch Quality of Healthcare Institute recommended that for five indications, spinal cord stimulation, dorsal root ganglion stimulation, or occipital nerve stimulation, together referred to as neurostimulation, can be considered effective and be reimbursed in the Netherlands. These five indications are the well and largely studied, accepted neurostimulation indications in scientific literature. As an extension of this, all the scientific societies involved in the Netherlands were required to reach a consensus about the diagnosis and treatment of these five formulated indications to describe the place of neurostimulation within the treatment algorithm. This article describes the development process and content of the consensus paper. MATERIALS AND METHODS: A scientific committee, consisting of three anesthesiologists/pain physicians (one of whom acted as the working group's chair), a neurosurgeon, a neurologist, a rehabilitation physician, and three nurse practitioners, participated. A quality advisor of the Knowledge Institute of the Dutch Federation of Medical Specialists supported the committee. The committee participated on behalf of their various scientific and professional societies. Three sessions were organized during which the place of neurostimulation in the treatment algorithm of the five relevant indications was discussed extensively. A narrative literature review and experts' opinions formed the basis of decision-making in the process. RESULTS: For all five diagnoses, general and diagnosis-specific treatment requirements, conservative treatments, and minimally invasive treatments are listed. These treatments should be considered in the chronic pain management algorithm before eventually proceeding to neurostimulation. DISCUSSION/CONCLUSION: The content of this consensus view was discussed and compared with other literature on cost-effectiveness and the place in the algorithm of treating chronic pain. This Dutch consensus paper could ultimately contribute to the maintenance or expansion of neurostimulation and the reimbursement.

The association between physical activity, sleep, and quality of life in patients in bio-chemical remission from Cushing's syndrome.

PURPOSE: Cushing's syndrome can negatively affect patient's quality of life (QoL) after treatment and remission. Exposure to increased cortisol over time can result in visceral obesity, which makes this population vulnerable to cardiovascular risk factors associated with visceral obesity. Sleep disturbances are present in patients in remission from Cushing's syndrome, impacting QoL. Moderate intensity physical activity performed 3 times a week decreases visceral obesity and improves sleep quality, therefore, engaging in physical activity after remission may improve patient's QoL. The current study aims to explore the association between sleep quality, physical activity, and QoL in patients in remission of Cushing's syndrome. METHODS: Patients in bio-chemical remission from Cushing's syndrome (N = 147) were recruited through the Cushing's Support and Research Foundation. Quality of life was assessed using the Cushing Quality of Life Questionnaire (CushingQoL), sleep was assessed with the Pittsburgh Sleep Quality Index (PSQI), and physical activity levels were assessed with the Godin-Sheppard Leisure-Time Physical Activity Questionnaire (GSLTPAQ). RESULTS: Sleep quality was significantly associated with both subscales of the CushingQoL (both p < .001), but physical activity was not significantly associated with either subscale. Sleep was not significantly associated with physical activity engagement in this sample. CONCLUSION: Results suggest that patients in remission from Cushing's syndrome experience sleep disturbances that are significantly associated with impaired QoL. Future research should focus on ameliorating the persisting clinical features of Cushing's syndrome that are associated with impaired QoL after bio-chemical remission to improve QoL and expedite complete functional remission.

Assessment of health surveys: fitting a multidimensional graded response model.

The multidimensional graded response model, an item response theory (IRT) model, can be used to improve the assessment of surveys, even when sample sizes are restricted. Typically, health-based survey development utilizes classical statistical techniques (e.g. reliability and factor analysis). In a review of four prominent journals within the field of Health Psychology, we found that IRT-based models were used in less than 10% of the studies examining scale development or assessment. However, implementing IRT-based methods can provide more details about individual survey items, which is useful when determining the final item content of surveys. An example using a quality of life survey for Cushing's syndrome (CushingQoL) highlights the main components for implementing the multidimensional graded response model. Patients with Cushing's syndrome (n = 397) completed the CushingQoL. Results from the multidimensional graded response model supported a 2-subscale scoring process for the survey. All items were deemed as worthy contributors to the survey. The graded response model can accommodate unidimensional or multidimensional scales, be used with relatively lower sample sizes, and is implemented in free software (example code provided in online Appendix). Use of this model can help to improve the quality of health-based scales being developed within the Health Sciences.

Adherence to treatment in men with hypogonadotrophic hypogonadism.

OBJECTIVE: Men with congenital hypogonadotrophic hypogonadism (CHH) typically require lifelong hormonal therapy, and discontinuing treatment can have negative health consequences. Little is known about adherence to treatment or the psychosocial impact of CHH. DESIGN: A sequential, multiple methods approach was used. A quantitative online survey assessed adherence to treatment, depressive symptoms and illness perceptions. Subsequently, qualitative focus groups explored patient-reported factors for adherence. PATIENTS: Adult men with CHH on at least 1 year of treatment were recruited internationally. MEASUREMENTS: Adherence (Morisky medication adherence scale), depressive symptoms (Zung self-rating depression scale) and patient perception of CHH (revised illness perception questionnaire) were assessed in an online survey, and comparisons were made to reference groups. Patient focus group discussions were conducted and thematic analysis was employed to identify patient-reported factors for adherence. RESULTS: In total, 101 men on long-term treatment were included (mean age 37 ± 11 years). Forty three percent (43/101) exhibited low medication adherence and a significantly elevated prevalence of mild, moderate or severe depressive symptoms (27%, 17%, 20%, respectively, all P < 0·001 vs reference population). Patients reported negative illness perceptions and significant psychosocial consequences. Focus group discussions (n = 3, 26 total patients) identified patient-, health professional- and healthcare system-related barriers as targets for improving adherence. CONCLUSIONS: Congenital hypogonadotrophic hypogonadism men are challenged to adhere to long-term treatment. Poor adherence may contribute to adverse effects on bone, sexual and psychological health. The psychosocial morbidity of CHH is significant and appears to be underappreciated by healthcare providers.

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.

Kinematic measures of brain drawings are associated with illness perceptions in people with stroke.

BACKGROUND: Previous research has shown that measuring the size and content of patients' drawings of their illness can reveal their perceptions and predict recovery. This study aimed to assess the usefulness of analyzing kinematic features of drawings. METHODS: A pilot observational study was conducted with 15 patients who had been hospitalized with a stroke 8 to 11 months previously. They were asked to draw a picture of what they thought had happened to their brain and describe the drawing using an electronic inking pen and digitizing tablet. Analysis of kinematic data (time to draw/write, drawing/writing speed, and pen pressure) was conducted using MovAlyzeR® software. Evaluations of physical functioning, quality of life, illness perceptions, and emotional well-being were administered, and correlations with kinematic measures assessed. RESULTS: Stronger pen pressure was associated with perceptions of greater control over the stroke. Faster drawing was correlated with greater worry about a recurrent stroke and the perception that the effects of the stroke would last longer. Needing more time to write was associated with perceptions of fewer consequences of the stroke. No associations between kinematic measures and indicators of stroke severity, physical, or emotional well-being were shown. CONCLUSIONS: Kinematic measures of stroke patients' drawings of their brain and comments were associated with illness perceptions and not measures of physical or emotional health status. The addition of kinematic analysis may add further utility to the assessment of patients' drawings of their illness. More studies need to be performed with larger sample sizes and other patient groups.

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.

Effectiveness of Infliximab in Patients with Complex Regional Pain Syndrome: A Case Series.

Purpose: Complex regional pain syndrome (CRPS) is a multi-mechanism disease, with an exaggerated inflammatory response as an important underlying mechanism. Auto-inflammation can theoretically be combated by anti-inflammatories, such as TNF-α inhibitors. This study's aim was to assess the effectiveness of intravenous infliximab, a TNF-α inhibitor, in patients with CRPS. Patients and Methods: CRPS patients treated with infliximab between January 2015 and January 2022 were approached to participate in this retrospective study. Medical records were screened for age, gender, medical history, CRPS duration, and CRPS severity score. Additionally, treatment effect, dose and duration, and side effects were extracted from medical records. Patients who still receive infliximab completed a short global perceived effect survey. Results: Eighteen patients received infliximab, and all but two gave consent. Trial treatment with three sessions of 5 mg/kg intravenous infliximab was completed in 15 patients (93.7%). Eleven patients (73.3%) were categorized as responders with a positive treatment effect. Treatment was continued in nine patients, and seven patients are currently treated. Infliximab dose is 5 mg/kg, and frequency is every four to six weeks. Seven patients completed a global perceived effect survey. All patients reported improvement (median 2, IQR 1-2) and treatment satisfaction (median 1, IQR 1-2). One patient described side effects such as itching and rash. Conclusion: Infliximab proved effective in 11 out of 15 CRPS patients. Seven patients are still being treated. Further research is needed on the role of infliximab in the treatment of CRPS and possible predictors of response to treatment.

The effect of recorded music on pain endurance (CRESCENDo) - A randomized controlled trial.

INTRODUCTION: Clarifying the effect of music on pain endurance in an experimental design could aid in how music should be applied during both surgical and non-surgical interventions. This study aims to investigate the effect of music on pain endurance and the involvement of the sympathetic adrenomedullary axis (SAM) and the hypothalamic-pituitary-adrenocortical axis (HPA). MATERIALS AND METHODS: In this randomized controlled trial all participants received increasing electric stimuli through their non-dominant index finger. Participants were randomly assigned to the music group (M) receiving a 20-minute music intervention or control group (C) receiving a 20-minute resting period. The primary outcome was pain endurance, defined as amount milliampere tolerated. Secondary outcomes included anxiety level, SAM-axis based on heart rate variability (HRV) and salivary alpha-amylase, and HPA-axis activity based on salivary cortisol. RESULTS: In the intention-to-treat analysis, the effect of music on pain tolerance did not statistically differ between the M and C group. A significant positive effect of music on pain endurance was noted after excluding participants with a high skin impedance (p = 0.013, CI 0.35; 2.85). Increased HRV was observed in the M-group compared to the C-group for SDNN (B/95%CI:13.80/2.22;25.39, p = 0.022), RMSSD (B/95%CI:15.97/1.64;30.31, p = 0.032), VLF (B/95%CI:212.08/60.49;363.67, p = 0.008) and HF (B/95%CI:821.15/150.78;1491.52, p = 0.0190). No statistical significance was observed in other secondary outcomes. CONCLUSIONS: The effect of the music intervention on pain endurance was not statistically significant in the intention-to-treat analysis. The subgroup analyses revealed an increase in pain endurance in the music group after correcting for skin impedance, which could be attributed to increased parasympathetic activation.

Glucocorticoid treatment in patients with complex regional pain syndrome: A systematic review.

BACKGROUND AND OBJECTIVE: The pathophysiology of complex regional pain syndrome (CRPS) is multifactorial, with an exaggerated inflammatory response being the most prominent. Treatment for CRPS is carried out according to the presenting pathophysiological mechanism. Anti-inflammatory treatment with glucocorticoids is therefore an option. The aim of this study was to systematically review the efficacy of glucocorticoids in CRPS. DATABASES AND DATA TREATMENT: Embase, Medline, Web of Science and Google Scholar were systematically searched for articles focusing on glucocorticoid treatment and CRPS. Screening based on title and abstract was followed by full-text reading (including reference lists) to determine the final set of relevant articles. Bias was assessed using the revised Cochrane risk-of-bias-tool for randomized trials (Rob2). RESULTS: Forty-one studies were included, which reported on 1208 CRPS patients. A wide variety of glucocorticoid administration strategies were applied, with oral being the most frequently chosen. Additionally, researchers found great heterogeneity in outcome parameters, including clinical symptoms, pain relief and range of motion. The use of glucocorticoids caused an improvement of parameters in all but two studies. In particular, improvement in pain relief and range of motion were reported. Using glucocorticoids in CRPS of longer duration (i.e. more than 3 months) appears to be less effective. CONCLUSION: Based on the present review, there is evidence to support glucocorticoid treatment in CRPS. However, the ideal administration route and dose remain unclear. We therefore recommend future research via an intervention study, as well as studies on the aetiological mechanisms and corresponding optimal treatment because CRPS pathogenesis is only partially understood. SIGNIFICANCE: Several studies point towards CRPS being an inflammatory response after tissue or nerve damage, with higher levels of pro-inflammatory cytokines in serum, plasma, cerebrospinal fluid and artificial skin blisters. Inflammation provides a possible role for glucocorticoids in treating CRPS. This systematic review provides a structured overview of glucocorticoid treatment in patients with CRPS. Improvement in pain and range of motion is shown. Systematic review registration number: PROSPERO-CRD42020144671.

Polysomnography-estimated sleep and the negative feedback loop of the hypothalamic-pituitary-adrenal (HPA) axis.

BACKGROUND: Sleep and stress are highly interrelated. To improve our understanding of the role of sleep in functioning of the negative feedback loop of the stress system, we assessed the association between sleep and functioning of the hypothalamic-pituitary-adrenal (HPA) axis in a population-based sample. METHODS: This study included 403 participants (mean age: 62.4 ± 5.0 years, 55% women) of the population-based Rotterdam Study. Between 2012 and 2014, sleep was assessed with polysomnography. Functioning of the negative feedback loop of the HPA axis was estimated by measuring cortisol levels before and after the intake of a very low dose of dexamethasone (0.25 mg) on average 0.9 ± 37.8 days after the polysomnography. We used linear regression analyses adjusted for multiple confounders and performed sensitivity analyses in a sample excluding those with clinically relevant depressive symptoms and using psychoactive medicine, and a sample excluding non-suppressors. RESULTS: Short N2 sleep (adjusted difference = 0.005, 95%CI = 0.002;0.009), long N3 sleep (adjusted difference = -0.007, 95%CI = -0.010;-0.003), and short sleep onset latency (adjusted difference = 0.006, 95%CI = 0.001;0.011) were associated with an enhanced response to dexamethasone, but the association of sleep onset latency did not survive multiple testing correction. Associations remained similar after excluding those with clinically relevant depressive symptoms and those using psychoactive medicine or exclusion of non-suppressors. CONCLUSIONS: This study suggests that more slow wave sleep is particularly associated with a stronger suppression of cortisol within the negative feedback loop of the HPA axis. These findings provide further support that slow wave sleep is important for health.

The longitudinal association of sleep and 24-hour activity rhythms with cortisol response to a very low dose of dexamethasone.

OBJECTIVES: Poor sleep is common in the general population, with hyperarousal and stress often suggested as causal factors. Conversely, sleep might also affect the stress response, in which the hypothalamic-pituitary-adrenal (HPA) axis plays a key role. We assessed the longitudinal association of sleep and 24-hour activity rhythms with functioning of the negative feedback loop of the HPA axis, as indicated by the cortisol response to a very low dose of dexamethasone. DESIGN: Longitudinal cohort. SETTING: Population-based. PARTICIPANTS: This study included 410 participants (mean age: 56.1 ± 5.5 years, 59% women) from the Rotterdam Study. For 217 participants, the cortisol response to dexamethasone was assessed again after a median follow-up of 5.7 years (IQR = 5.5-5.8). MEASUREMENTS: Between 2004 and 2007, sleep and 24-hour activity rhythms were estimated with actigraphy (mean duration: 146 ± 19.6 hours) and sleep quality with the Pittsburgh Sleep Quality Index. To assess the negative feedback loop of the HPA axis we measured cortisol before and after the intake of a very low-dose of dexamethasone (0.25 mg). RESULTS: Unstable (B = 1.64, 95% CI = 0.78; 2.50) and fragmented (B = -1.31, 95% CI = -2.17; -0.45) 24-hour activity rhythms, and a poor self-rated sleep quality (B = -0.02, 95% CI = -0.04; 0.00) were associated with an enhanced cortisol response to dexamethasone over time, also in those without clinically relevant depressive symptoms and those not using psychoactive medication. CONCLUSIONS: This study demonstrates a longitudinal association of disturbed 24-hour activity rhythms and poor self-rated sleep quality with an enhanced cortisol response to dexamethasone, in other words stronger suppression of cortisol. STATEMENT OF SIGNIFICANCE: This study shows that disturbed 24-hour activity rhythms and a poor self-rated sleep quality are associated with functioning of the negative feedback loop over a period of years.

Stress and information processing: acute psychosocial stress affects levels of mental abstraction.

BACKGROUND: One mechanism by which acute psychosocial stress effects health-related cognitions and behaviors is through changes in the level of mental abstraction when processing information. However, it is unclear whether levels of mental abstraction would be higher or lower after an acute psychosocial stressor. OBJECTIVES: This research examined acute psychosocial stress's impact on levels of mental abstraction. DESIGN: Randomized between-subjects experimental design. METHODS: A diverse sample of 164 undergraduate students aged 18-24 years old were randomly assigned to an acute psychosocial stressor or non-stressful control condition. Blood pressure (BP), heart rate (HR), and negative affect were monitored throughout the study and mental abstraction was measured at the end of each condition. RESULTS: Mental abstraction was statistically significantly higher (i.e., more abstract) after the stress condition than after the control condition (p = 0.005, d = 0.44). This association was partially explained by negative affect (p = 0.017), but not BP or HR (ps > 0.60). CONCLUSIONS: Acute psychosocial stress is associated with higher levels of mental abstraction after the stressor. These findings may have implications for stress-relevant interventions as accounting for the level of mental abstraction may enhance the efficacy of the intervention.

Neuropsychiatric disorders in Cushing's syndrome.

Glucocorticoids are crucial in the initiation and consolidation of the stress response. Patients with active Cushing's syndrome (CS) are exposed to excessive endogenous glucocorticoid levels. In these patients, psychopathology is often being observed. The most common co-morbid disorder is major depression, but to a lesser extent mania and anxiety disorders have also been reported. A severe clinical presentation of CS often also includes depression. Reduction of glucocorticoid synthesis or action, either with metyrapone, ketoconazole, or mifepristone, rather than treatment with antidepressant drugs, is generally successful in relieving depressive symptoms, as well as other disabling symptoms. Following successful surgical treatment of hypercortisolism, both physical and psychiatric signs and symptoms improve substantially. However, it appears that patients do not completely return to their premorbid level of functioning and persistent impairment of quality of life and cognitive function has been reported despite long-term cure. At present, it is not clear whether, and to which extent, psychopathology still affects general well-being after long-term cure of CS.

Giving A Face to Chemotherapy-Induced Alopecia: A Feasibility Study on Drawings by Patients.

OBJECTIVE: Individuals with cancer experience the impact of chemotherapy on hair loss in different ways. The aim of this pilot study was to explore patients' experiences of alopecia through patients' drawings. METHODS: Fifteen female patients diagnosed with cancer and treated with chemotherapy were recruited at the oncological day-care unit of a teaching hospital in the Netherlands. Participants completed a semi-structured interview about alopecia. They drew their head and hair before and during chemotherapy and completed the Brief Illness Perception Questionnaire (B-IPQ). RESULTS: The drawings revealed predominantly physical effects, rather than emotions. Emotions were evident in the text that patients wrote under the drawings and in the B-IPQ open question about the perceived consequences of alopecia. The overall impact of alopecia that emerged from the drawings and the B-IPQ corresponded to the information retrieved from the interviews, namely disappointment, insecurity, sadness, and confrontation. CONCLUSIONS: Drawings expose cognitive and emotional responses to alopecia that may be relatively unexplored when using traditional assessment methods such as questionnaires or interviews. In future research, the drawing instructions need to be more specifically focused on feelings in order to better capture emotional reactions to hair loss.

Emotions and Coping Strategies During Breast Cancer in Latina Women: A Focus Group Study.

We conducted three focus groups among Latina breast cancer (BC) survivors (N = 23). The aim was to qualitatively identify how Latina women cope with BC treatment, what emotions arose during their treatment, and if they experienced any medical barriers during their journey. Women were also asked about a potential online resource. Specific emotions of anger and fear were commonly identified but related to different contexts. Family support and spirituality were frequently cited as two positive coping resources during BC and its treatment. Additionally, women expressed what they believe would be essential in an online community that would provide aid with BC support. Given the importance of reaching this vulnerable minority group, we recommend that future studies contextualize Latina women's emotional experiences and coping skills associated with BC as indicators of well-being. Along with previous studies, this study highlights the importance of developing culturally appropriate interventions. Additionally, we address alternative forms of resources that may be more accessible.

A systematic review of patients' drawing of illness: implications for research using the Common Sense Model.

Recent research has examined patients' drawings of their illness as a means to identify patients' illness representations. The aim of this systematic review was to examine which representations are evident in patients' drawings, and whether drawing assessments are associated with patient outcomes. Ten electronic databases were searched for published journal papers in English up to 1 July 2017. Narrative synthesis summarised findings by participant characteristics, study design, illness representations, and associations with outcomes. There were 101 eligible studies, published across 29 different countries, with 27 different disease categories; 54 of the studies were with adults and 80 were cross-sectional. All core illness perception domains were evident; the most common being identity and related concepts (including symptoms, anatomy, pathophysiology), and emotional representations (including fear, denial, stigma). Perceptions of treatment and the clinical and social environment were evident. More organ damage drawn and larger drawing size were associated with worse perceptions and health outcomes, and drawings distinguished between patient groups. Limitations include the inability to conduct meta-analysis. In conclusion, patients' drawings reveal additional domains of illness representations, specifically perceptions of pathophysiology, treatment and social environments, as well as illness pre-occupation. These findings expand theories of self-regulation and suggest image-based intervention strategies.

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.

Assessing Differences in How the CushingQoL Is Interpreted Across Countries: Comparing Patients From the U.S. and the Netherlands.

Background: Cultural factors influence how individuals define, evaluate, and approach their quality of life (QoL). The CushingQoL is a widely used disease-specific questionnaire to assess QoL in patients with Cushing's syndrome. However, there is no information about potential cross-country differences in the way patients interpret the items on the CushingQoL. Thus, the current study examined if the CushingQoL is interpreted in the same way across nationalities. Methods: Patients from the U.S. (n = 260) and the Netherlands (n = 103) were asked to fill out the CushingQoL and a short demographics survey. Measurement invariance testing was utilized to explore whether or not the patient samples from the U.S. and the Netherlands interpreted items on the CushingQoL in the same way. Results: A two-subscale scoring approach was used for the CushingQoL. Model fit was good for the U.S. sample (e.g., CFI = 0.983; TLI = 0.979), as well as the Dutch sample (e.g., CFI = 0.971; TLI = 0.964). Invariance testing revealed that three of the 12 items on the CushingQoL were interpreted differently across the groups. These items are all related to psychosocial issues (e.g., irritable mood and worrying about one's health). Items assessing physical aspects of QoL did not vary across the U.S. and Dutch samples. Conclusions: Interpreting results from the CushingQoL requires careful consideration of country of residence, as this appears to impact the interpretation of the questionnaire.