The personal impact of living with a myeloproliferative neoplasm.

OBJECTIVE: The aim of this study is to gain insight into the physical, psychological and social impact of having a myeloproliferative neoplasm (MPN), a rare type of cancer with an often chronic course. METHODS: An online survey was conducted among 455 Dutch MPN patients (62.7% female, age M 63) to explore the impact of the disease by measuring the MPN symptom burden (MPN-SAF TSS) and quality of life (QoL) (EORTC QLQ-C30) and its subscales within a hierarchical QoL model. We examined differences in MPN symptom burden and QoL in relation to sociodemographic and disease-related factors. Hierarchical regression analysis was used to explain variances in QoL. RESULTS: Most patients (97%) experienced MPN-related health complaints, with a significantly higher MPN symptom burden in women (M 31.50) compared to men (M 24.10). Regarding to fatigue and cognitive functioning MPN patients suffered more compared to a reference group of other cancers. MPN subtype or type of treatment did not show significant differences in MPN symptom burden or QoL. However, experiencing side effects, complications or comorbidities significantly negatively affected MPN symptom burden and QoL. 48.8% of patients reported that MPN affected their ability to work. The explained variance in overall QoL was 58%, most importantly by disease progression, comorbidities, MPN symptom burden and role, emotional and social functioning. CONCLUSION: This study revealed that having an MPN has a negative impact on several domains of QoL. Symptom assessment and support should be included in the healthcare management of MPN patients.

Psychometric properties of the Dutch extended Cancer Survivors' Unmet Needs measure (CaSUN-NL).

Information and support needs increase emotional distress and can impede cancer survivors' adjustment. To investigate the information and support needs of Dutch cancer survivors, the Cancer Survivors' Unmet Needs measure (CaSUN) was translated into Dutch and applied in two Dutch studies with cancer survivors (N = 255; N = 467). The CaSUN-NL entailed the original five CaSUN scales, extended with respectively a returning to work and lifestyle scale. This study aimed to determine the psychometric properties of the CaSUN-NL. To assess validity, a maximum likelihood factor analysis was employed. Construct validity was analysed using Pearson's and Spearman's correlation coefficients. To assess reliability, test-retest (Kappa coefficient) and internal consistency (Cronbach's alpha) values were determined. Factor analysis revealed the original five factors. Test-retest reliability was low (r ≤ .15, 93% retest response). Internal consistency values were high (Cronbach's alpha = 0.92-0.94), except for lifestyle. Significant correlations were found between total number of unmet needs with anxiety (r = .55), depression (r = .49), negative adjustment (r = .50), quality of life (r = -.52) and age (r = -.24). The CaSUN-NL is valid and reliable to investigate the unmet information and support needs of Dutch cancer survivors.

Development of a computer-tailored physical activity intervention for prostate and colorectal cancer patients and survivors: OncoActive.

BACKGROUND: Cancer and cancer treatment coincide with substantial negative physical, psychological and psychosocial problems. Physical activity (PA) can positively affect the negative effects of cancer and cancer treatment and thereby increase quality of life in CPS. Nevertheless, only a minority of CPS meet PA guidelines. We developed the OncoActive (OncoActief in Dutch) intervention: a computer-tailored PA program to stimulate PA in prostate and colorectal CPS, because to our knowledge there are only a few PA interventions for these specific cancer types in the Netherlands METHODS: The OncoActive intervention was developed through systematic adaptation of a proven effective, evidence-based, computer-tailored PA intervention for adults over fifty, called Active Plus. The Intervention Mapping (IM) protocol was used to guide the systematic adaptation. A literature study and interviews with prostate and colorectal CPS and health care professionals revealed that both general and cancer-specific PA determinants are important and should be addressed. Change objectives, theoretical methods and applications and the actual program content were adapted to address the specific needs, beliefs and cancer-related issues of prostate and colorectal CPS. Intervention participants received tailored PA advice three times, on internet and with printed materials, and a pedometer to set goals to improve PA. Pre- and pilot tests showed that the intervention was highly appreciated (target group) and regarded safe and feasible (healthcare professionals). The effectiveness of the intervention is being evaluated in a randomized controlled trial (RCT) (n = 428), consisting of an intervention group and a usual care waiting-list control group, with follow-up measurements at three, six and twelve months. Participants are recruited from seventeen hospitals and with posters, flyers and calls in several media. DISCUSSION: Using the Intervention Mapping protocol resulted in a systematically adapted, theory and evidence-based intervention providing tailored PA advice to prostate and colorectal CPS. If the intervention turns out to be effective in increasing PA, as evaluated in a RCT, possibilities for nationwide implementation and extension to other cancer types will be explored. TRIAL REGISTRATION: The study is registered in the Dutch Trial Register (NTR4296) on November 23rd 2013 and can be accessed at http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=4296 .

Prevalence of rheumatic valvular heart disease in Rwandan school children: echocardiographic evaluation using the World Heart Federation criteria.

BACKGROUND: Rheumatic fever (RF) and rheumatic valvular heart disease (RHD) remain important medical, surgical and public health concerns in many parts of the world, especially in sub-Saharan Africa. However, there are no published data from Rwanda. We performed a RHD prevalence study in a randomly selected sample of Rwandan school children using the 2012 World Heart Federation (WHF) criteria. METHODS: Echocardiographic assessment of 2 501 Rwandan school children from 10 schools in the Gasabo district near Kigali was carried out. Resulting data were evaluated by four experienced echocardiographers. Statistical analyses were carried out by statisticians. RESULTS: RHD prevalence was 6.8/1 000 children examined (95% CI: 4.2/1 000-10.9/1 000). Seventeen met WHF criteria for RHD, 13 fulfilled criteria for 'borderline' RHD and four were 'definite' RHD. None of these 17 had been previously identified. CONCLUSION: These data indicate a significant burden of RHD in Rwanda and support a need for defined public health RF control programmes in children there.

High intensity smoking cessation interventions: Cardiac patients of low socioeconomic status and low intention to quit profit most.

BACKGROUND: Without assistance, smokers being admitted to the hospital for coronary heart disease often return to regular smoking within a year. OBJECTIVE: This study assessed the 12-month effectiveness of a telephone and a face-to-face counselling intervention on smoking abstinence among cardiac patients. Differential effects for subgroups varying in their socioeconomic status and intention to quit smoking were also studied. METHODS: A randomised controlled trial was used. During hospital stay, smokers hospitalised for coronary heart disease were assigned to usual care (n = 245), telephone counselling (n = 223) or face-to-face counselling (n = 157). Eligible patients were allocated to an intervention counselling group and received nicotine patches. After 12 months, self-reported continued abstinence was assessed and biochemically verified in quitters. Effects on smoking abstinence were tested using multilevel logistic regression analyses applying the intention-to-treat approach. RESULTS: Compared with usual care, differential effects of telephone and face-to-face counselling on continued abstinence were found in patients with a low socioeconomic status and in patients with a low quit intention. For these patients, telephone counselling increased the likelihood of abstinence threefold (OR = 3.10, 95 % CI 1.32-7.31, p = 0.01), whereas face-to-face counselling increased this likelihood fivefold (OR = 5.30, 95 % CI 2.13-13.17, p < 0.001). Considering the total sample, the interventions did not result in stronger effects than usual care. CONCLUSION: Post-discharge telephone and face-to-face counselling interventions increased smoking abstinence rates at 12 months compared with usual care among cardiac patients of low socioeconomic status and low quit intentions. The present study indicates that patients of high socioeconomic status and high quit motivation require different cessation approaches.

Effectiveness of video- versus text-based computer-tailored smoking cessation interventions among smokers after one year.

BACKGROUND: In western countries, smoking prevalence rates are high among smokers unmotivated to quit and those with a lower socioeconomic status (LSES). Multiple computer tailoring and the use of audio-visual aids may improve such interventions and increase cessation in LSES smokers. This study assessed the 12-month effectiveness of a video- and text-based computer-tailored intervention. METHODS: A randomized controlled trial in the Netherlands was used in which smokers were allocated to the video-based condition (VC) (N=670), the text-based condition (TC) (N=708) or the control condition (CC) (brief generic text advice) (N=721). After 12months, self-reported prolonged abstinence was assessed and biochemically verified in respondents indicating to have quit smoking. Three analysis strategies were used to assess the effects: (1) multiple imputation (MI); (2) intention-to-treat (ITT); (3) complete case analysis (CC). RESULTS: VC was more effective in prolonged abstinence compared to CC (odds ratio (OR)=1.90, p=.005) and the text-based condition (OR=1.71, p=.01). VC was furthermore more effective than TC. No differences were found for SES and motivational levels. Results were similar when using ITT and CC. For our secondary outcome seven-day point prevalence abstinence; however, neither VC (OR=1.17, p=.34) or TC (OR=0.91, p=.52) outperformed the CC. CONCLUSION: The video-based computer-tailored intervention was effective in obtaining substantial long-term abstinence compared to the text-based version and a brief generic text advice.

The differentiated effectiveness of a printed versus a Web-based tailored physical activity intervention among adults aged over 50.

This study provides insight in the effectiveness of a print-delivered and a Web-based physical activity (PA) intervention (with or without additional environmental information on local PA possibilities) among people aged over 50. Intervention groups (print-delivered basic [PB; n = 439], print-delivered environmental [PE; n = 435], Web-based basic [WB; n = 423], Web-based environmental [WE; n = 432]) and a control group (n = 411) were studied in a clustered randomized controlled trial. Participants received three times tailored advice within four months, targeting the psychosocial determinants of PA, and additional environmental information (in two conditions). Outcome measures include weekly minutes and days of sufficient PA 6 months after the start, considering age, gender, educational level, body mass index, the presence of a chronic physical limitation and PA intentions as possible effect moderators. The results showed that the PB (B = 192.47; 95% CI = 75.24-309.71; P = 0.003), the PE (B = 229.31; 95% CI = 108.73-349.89; P = 0.001) and the WB-intervention condition (B = 214.25; 95% CI 88.65-339.85; P = 0.002) resulted in significantly increased weekly minutes of PA. Only the printed conditions resulted in increased days of sufficient PA (PB: B = 0.63; 95% CI = 0.35-0.92; P < 0.001; PE: B = 0.55; 95% CI = 0.26-0.85; P = 0.001). Additional environmental information did not increase intervention effects. Differences in effect were found between age and gender subgroups. In conclusion, both printed and Web-based interventions can be effective in increasing PA in adults aged over 50.

How to encourage smokers to participate in web-based computer-tailored smoking cessation programs: a comparison of different recruitment strategies.

The reach, retention and costs of four strategies aimed to recruit smokers for participation in a computer-tailored smoking cessation intervention was explored. The study was part of a randomized controlled trial whereby 832 respondents were randomized to three conditions. Smokers were invited by general practitioners (GPs), newspapers, Internet and other strategies (i.e. mailing organizations) to take part. ANOVA's/Chi-square tests explored sample differences. Logistic regression analyses investigated differences between the samples regarding retention and smoking behaviour. Smokers recruited via GPs (N = 144) had a lower educational level and suffered more from chronic obstructive pulmonary disease compared with respondents recruited via Internet (N = 307) (χ(2) = 11.554, df = 3, P = 0.009). Less motivated respondents recruited by GPs were more likely to return to study compared with the less motivated respondents recruited by 'other recruitment' strategies (χ(2) = 6.416, df = 3, P = 0.093). Highly addicted respondents recruited from newspapers (N = 213) were less likely to make a quit attempt compared with highly addicted respondents recruited by GPs (OR = 0.334, P = 0.035). Females from newspapers were less likely to remain abstinent compared with the GP sample (OR = 0.337, P = 0.005). Recruitment via GPs showed highest costs. Recruitment strategy influenced the type of smokers. Group differences were associated with different patterns of quitting.

Differences in the use and appreciation of a web-based or printed computer-tailored physical activity intervention for people aged over 50 years.

This study provides insight into the use and appreciation of a tailored physical activity intervention for people aged over 50 years in different intervention conditions (i.e. printed versus web-based and basic versus environmental). Participants (within a clustered randomized controlled trial) received printed or web-based-tailored advice three times within 4 months. Half of the participants also received environmental information. Differences in use and appreciation between both delivery modes and between the basic and environmental condition (similar delivery mode) were assessed at 3 (N = 935) and 6 (N = 649) months after baseline using analyses of variance and chi-square test. The use of the printed intervention (i.e. 92.7-98.2% read, 70.1-76.5% kept and 39.9-56.8% discussed) was significantly higher and printed intervention components were better appreciated than web-based intervention (scores, respectively, 6.06-6.91 versus 5.05-6.11 on a scale of 1-10). In-depth appreciation (e.g. reliability, perceived individualization) was average to high, without differences between intervention conditions. Additional environmental information did not increase appreciation; however, environmental intervention components were more used compared with basic intervention components. Integration of environmental components can stimulate active use of the intervention. To increase the public impact and prevent dropout by participants of web-based physical activity interventions, design modifications are needed for ease of use and improved appreciation.

SQ4U - a computer tailored smoking relapse prevention program incorporating planning strategy assignments and multiple feedback time points after the quit-attempt: development and design protocol.

BACKGROUND: The SQ4U (Stay Quit for You)-study aims to test the efficacy of two computer tailored smoking relapse prevention programs which incorporate planning strategy assignments and provide tailored feedback at multiple time points after the quit-attempt. The programs differ in the support provided after the quit-attempt. This paper aims to describe the development and design of SQ4U. METHODS/DESIGN: SQ4U-respondents were daily smokers in the 18-65 years age group, who were motivated to quit smoking and willing to make a quit-attempt within 1 month of registration. The study is a randomized controlled trial with three conditions: 1. Control group, 2. Action planning (AP) program, 3. Action planning plus (AP+) program. Respondents in the control group only filled out questionnaires. The AP program consisted of computer tailored baseline feedback based on the I-Change Model and six planning strategy assignments. The AP+ program provided the same program elements as the AP program, but was extended with tailored feedback at eleven time points after the quit-attempt. The feedback targeted (recovery) self-efficacy, planning and negative affect. There were two follow-up measurements at 6 and 12 months after baseline. User experiences and the efficacy of the programs in fostering seven-day point prevalence and continued abstinence were examined using a process evaluation and logistic regression analyses. DISCUSSION: The present paper outlines the development and design of the SQ4U-study. This study has the potential to provide a new effective computer tailored smoking relapse prevention program as well as insight into effective smoking relapse prevention strategies.

The role of self-efficacy, recovery self-efficacy, and preparatory planning in predicting short-term smoking relapse.

OBJECTIVES: This study aims to identify the role of self-efficacy, recovery self-efficacy, and preparatory planning with regard to short-term smoking relapse. We also assessed whether the importance of these variables differed for smokers quitting individually and without help (self-quitters) and smokers quitting with the help of a smoking cessation course (group quitters). DESIGN: A longitudinal quasi-experimental study with follow-ups at 1 and 3 months after the quit attempt was conducted in order to assess the role of baseline self-efficacy, recovery self-efficacy, and preparatory planning on short-term relapse. METHODS: The recruitment included adult daily smokers (N= 121), quitting in a smoking cessation course (N= 57) and self-quitters (N= 64). Respondents received internet-based questionnaires 2 weeks before quitting (baseline) and 1 and 3 months after the quit attempt. Predictors of relapse were analysed using logistic regression analyses. RESULTS: Relapse at 1 and 3 months after the quit attempt was predicted by low levels of baseline self-efficacy. Simple slope analyses revealed that less preparatory planning significantly predicted relapse at 1 month after the quit attempt among group quitters, but not among self-quitters. Recovery self-efficacy was only predictive of relapse after 1 month when self-efficacy was excluded from the analyses. Moreover, among group quitters, the results indicated a borderline significant curved relation between recovery self-efficacy and relapse after 1 month. CONCLUSIONS: Our results suggest that more research is needed on the role of preparatory planning and recovery self-efficacy. Moreover, we recommend incorporating self-efficacy increasing techniques in relapse-prevention interventions.

Factors underlying smoking relapse prevention: results of an international Delphi study.

No definitive picture of the factors determining smoking relapse exists, and many smoking relapse prevention programmes have only modest behavioural effects. This study aims to identify the level of consensus among and compare the opinions of two groups of experts (researchers and coaches who provide smoking cessation courses) regarding factors already studied in relation to smoking relapse, factors that have not yet been addressed and ideas on how to improve prevention programmes. A three-round Delphi method was employed. In the first round, 15 researchers completed an electronic questionnaire on factors associated with relapse. The results were used to develop a structured questionnaire for the second round, which was completed by 47 researchers and 61 coaches. The second-round results were then presented to the same experts in the third round, enabling them to re-rate their answers. Results revealed high consensus on some factors already identified as predicting relapse (e.g. self-efficacy), new factors (e.g. action planning) and several methods to improve prevention programmes. Generally speaking, the researchers and coaches provided similar suggestions. The results paint a picture of the current state of knowledge on relapse-related factors and point the way to areas for further research.

Determinants of awareness, initiation and maintenance of physical activity among the over-fifties: a Delphi study.

To develop effective interventions to stimulate physical activity (PA), insight into its underlying variables is needed. The aim of this study was to obtain an overview of the most relevant determinants of awareness, initiation and maintenance of PA among the over-fifties by means of a three-round Delphi study. In the first round, 17 key-experts outlined possible relevant determinants into an open-ended electronic questionnaire. In the second round, 118 experts completed a structured electronic questionnaire that was based on the first round results, in which they scored each determinant on its relevance. In the third round, experts were asked to re-rate the relevance of each determinant, after feedback was given about the group median relevance score. After three rounds, the experts agreed on 30 relevant determinants of the three phases of PA. When compared with longitudinal studies, the Delphi study pointed out new concepts, such as several post-motivational and social and environmental determinants as possible relevant determinants, suggesting that this method has the potential to trace new and promising determinants. The results further showed that next to similarities, much dissimilarity in relevant determinants of awareness, initiation and maintenance of PA was found, suggesting that most determinants could be phase specific.

Definite involuntary childlessness: associations between coping, social support and psychological distress.

BACKGROUND: Around 4% of all couples remain involuntarily childless. These people often experience insufficient social support, which further aggravates the distress symptoms such as physical health problems, anxiety, depression and complicated grief. This study investigates the association of coping style and the degree of satisfaction regarding social support from primary support groups with distress symptoms of involuntarily childless individuals. MATERIALS AND METHODS: Subjects in this cross-sectional study were people who wanted to have children with their partner but were unable to conceive and had acknowledged their involuntary childlessness. The sample consisted of 116 persons (response 88%) with an average age of 39 years (SD = 6.0), with 75% women. The sample group completed a questionnaire consisting of passive and active coping styles from the Utrecht Coping List (UCL), the discrepancy variant of the Social Support List (SSL-D), the short version of the Questionnaire on Experienced Health Complaints (VOEG-21), the Hospital Anxiety and Depression Scale (HADS) and the Inventory of Complicated Grief-Revised (ICG-R), adapted for this study. RESULTS: Women especially experienced more health complaints, more anxiety and depression symptoms and more complicated grief than the general population. Regression analysis shows that when controlled for sex and the duration of involuntary childlessness, the concepts passive coping style and dissatisfaction with social support were positively associated with health complaints, depression, anxiety and complicated grief. The concept active coping style was negatively associated with depression, anxiety and complicated grief. Explained variance of the different distress symptoms varied from 30 to 65%. A moderating association of perceived social support is only found between a passive coping style and health complaints. CONCLUSIONS: Psychosocial interventions should be continued after the childlessness has become definite. By teaching couples how to cope actively with their childlessness and how to ask for support, the negative consequences of their childlessness may be decreased.

Identifying determinants of protocol adoption by midwives: a comprehensive approach.

Adoption of potentially effective preventive interventions often fails. This study aimed to identify factors that determine why midwifery practices decide to use a smoking cessation protocol, using a comprehensive model of both organizational and psychosocial factors. A cross-sectional survey was conducted among representatives of all 446 Dutch midwifery practices, of whom 251 (56%) responded. The results show that adoption of the protocol was facilitated by the presence of practice assistants and impeded by a large proportion of clients of foreign ethnic origin. The most successful information channel was the midwives' professional association. A consistent positive attitude (perceiving a lot of advantages, few disadvantages and a low level of ambivalence) and positive social norms toward using the protocol, a perceived large proportion of midwives who use the protocol and knowledge about the protocol significantly increased the likelihood of adoption. The decision to use the protocol was better explained by personal awareness and motivation factors than by organizational factors.

Factors related to misperception of physical activity in The Netherlands and implications for health promotion programmes.

With respect to health risk behaviours, many people are unaware of their own risk behaviour and regard their behaviour as more healthy than it really is. This article studied differences between people with and without misperception of their physical activity with respect to several reference points: the social comparison style of people (upward, equal and downward); the body self-image with regard to their weight [body mass index (BMI) and self-rated weight]; and linkages of physical activity with different outcome expectancies (health, appearance, weight, feeling fit, relaxation and stress relief). Results from 516 respondents (response 52%; 56% women) with a mean age of 53.7 years found that respondents who incorrectly think that their physical activity is adequate (overestimators) tend to rate their physical activity more often in comparison to others. Furthermore, overestimators and people who correctly think they exercise enough more often use downward comparison, while underestimators and people who know they exercise too little mostly use upward comparison. People who, rightly or not, think their weight is adequate or who have a lower BMI, more often assume that their physical activity is sufficient or high. People who, rightly or not, think that their physical activity is adequate more often score higher on other reasons to be physically active besides health. Increasing the accuracy of people's self-perceptions of physical activity may be important to incorporate into strategies to promote physical activity in populations at risk of inactivity.

A checklist to improve patient education in a cardiology outpatient setting.

A randomised controlled trial with process evaluation was conducted (n=103) to study the use and impact of a Frequently Asked Questions checklist as a means to prepare coronary outpatients for a regular visit to their cardiologist. It was hypothesised that use of the checklist would result in better patient-doctor communication, lower state anxiety and higher knowledge scores among patients, resulting in greater patient satisfaction. The patients in the experimental group (n=53) received the checklist, with written instructions in addition to a brochure from the Dutch Heart Foundation, at home to prepare for their visit. The control patients only received the brochure. State anxiety immediately before the visit was significantly lower among experimental patients. No significant differences in patient satisfaction or knowledge were found. Using the checklist did not result in longer patient-doctor consultations. Experimental patients regarded the checklist as a useful tool to prepare for their visits to the clinic. We conclude that the checklist may be a useful tool for cardiac patients to prepare for their visits to their cardiologist.

Psycho-social determinants and motivational phases in smoking behavior of cardiac inpatients.

BACKGROUND: To explore possibilities for health education, this study analyzed the differences in motives regarding smoking cessation of cardiac inpatients in various motivational phases. The Attitude-Social influence-Efficacy Model (ASE model) was used to assess motives, while motivational phases were measured with concepts from the Transtheoretical Model. METHODS: Data on smoking behavior, attitudes, social influences, self-efficacy expectations, and motivational phases were collected from a sample of 532 cardiac inpatients. A revised typology of the Transtheoretical Model was used for measuring motivational phases and resulted in four groups: smokers in precontemplation, smokers in contemplation, externally motivated actors, and internally motivated actors. Analysis of variance with Tukey's multiple comparison test was used to study differences in psycho-social determinants between these four groups. RESULTS: As hypothesized, externally motivated actors differed from internally motivated actors in having less positive attitudes, less social support, and lower self-efficacy expectations. Attitudes and social support were most positive among smokers in contemplation and internally motivated actors. Self-efficacy expectations were lowest among subjects in precontemplation and contemplation. CONCLUSIONS: Subjects in different motivational phases differed in their psycho-social determinants. Therefore, it is recommended that stage-tailored education be developed. Finally, externally motivated actors have to be approached in a different way than internally motivated actors.