Using a retrospective pretest instead of a conventional pretest is replacing biases: a qualitative study of cognitive processes underlying responses to thentest items.

BACKGROUND: The thentest design aims to detect and control for recalibration response shift. This design assumes (1) more consistency in the content of the cognitive processes underlying patients' quality of life (QoL) between posttest and thentest assessments than between posttest and pretest assessments; and (2) consistency in the time frame and description of functioning referenced at pretest and thentest. Our objective is to utilize cognitive interviewing to qualitatively examine both assumptions. METHODS: We conducted think-aloud interviews with 24 patients with cancer prior to and after radiotherapy to elicit cognitive processes underlying their assessment of seven EORTC QLQ-C30 items at pretest, posttest and thentest. We used an analytic scheme based on the cognitive process models of Tourangeau et al. and Rapkin and Schwartz that yielded five cognitive processes. We subsequently used this input for quantitative analysis of count data. RESULTS: Contrary to expectation, the number of dissimilar cognitive processes between posttest and thentest was generally larger than between pretest and posttest across patients. Further, patients considered a range of time frames when answering the thentest questions. Moreover, patients' description at the thentest of their pretest functioning was often not similar to that which was noted at pretest. Items referring to trouble taking a short walk, overall health and QoL were most often violating the assumptions. CONCLUSIONS: Both assumptions underlying the thentest design appear not to be supported by the patients' cognitive processes. Replacing the conventional pretest-posttest design with the thentest design may simply be replacing one set of biases with another.

Perceived need for information among patients with a haematological malignancy: associations with information satisfaction and treatment decision-making preferences.

For patients with haematological malignancies, information on disease, prognosis, treatment and impact on quality of life is of the utmost importance. To gain insight into the perceived need for information in relation to sociodemographic and clinical parameters, comorbidity, quality of life (QoL) and information satisfaction, we compiled a questionnaire based on existing validated questionnaires. A total of 458 patients diagnosed with a haematological malignancy participated. The perceived need for information was moderate to high (40-70%). Multivariate regression analyses showed that a higher need for information was related to younger age, worse QoL, being member of a patient society and moderate comorbidity. The need for disease and treatment-related information was higher than the need for psychosocial information. A higher need for disease and treatment-related information was associated to being diagnosed with multiple myeloma. A higher need for psychosocial information was related to a lower educational level. The information provision could be improved according to 41% of the patients. Higher satisfaction with provided information was associated with better QoL. Most patients (62%) reported that they wanted to be fully informed about their illness and actively involved in treatment decision-making. The results contribute to improving patient-tailored information provision and shared decision-making in clinical practice.

Cognitive coping style (monitoring and blunting) and the need for information, information satisfaction and shared decision making among patients with haematological malignancies.

OBJECTIVE: A haematological malignancy is a serious, life-altering disease and may be characterised as an uncontrollable and unpredictable stress situation. In dealing with potentially threatening information, individuals generally utilise two main cognitive coping styles: monitoring (the tendency to seek threat-relevant information) and blunting (avoiding threatening information and seeking distraction). The aim of this study was to obtain insight into the association between cognitive coping style and (a) need for information, (b) satisfaction with information, (c) involvement in decision making, and (d) quality of life (QoL). METHODS: In this cross-sectional study, coping style was assessed among adult patients diagnosed with a haematological malignancy, using an adapted version of the Threatening Medical Situations Inventory. Information need, information satisfaction, decision-making preference and QoL were measured with validated questionnaires. RESULTS: In total, 458 patients returned the questionnaire (66%). A monitoring coping style was positively related to need for both general and specific information. Blunting was positively and QoL was negatively related to need for information. Monitoring was positively related to involvement in decision-making and negatively to information satisfaction. Using multivariate analysis, this relation between monitoring and information satisfaction disappeared, and for blunting, we found a negatively significant relation. QoL was not related to coping style. CONCLUSIONS: Among patients with haematological malignancies, coping style is related to a need for information, information satisfaction, and involvement in treatment decision-making. Therefore, it is important for health care professionals to be aware of individual differences in cognitive coping style.

Perceived need for information of patients with haematological malignancies: a literature review.

AIMS AND OBJECTIVES: To provide insight into the perceived need for information of patients with haematological malignancies. BACKGROUND: Providing timely and accurate information to patients diagnosed with a haematological malignancy is a challenge in clinical practice; treatment often has to start promptly, with little time to inform patients. DESIGN: Literature review. METHODS: A comprehensive literature search was conducted from all available literature to May 2013 in the databases: Cumulative Index to Nursing and Allied Health Literature, PsycINFO and PubMed (Medline). Relevant studies were reviewed regarding the perceived need for information on various topics, sources of information and satisfaction with information provided. RESULTS: The initial search revealed 215 articles, fourteen of which were relevant. Patients need basic information on the disease (diagnosis and diagnostics), treatment (various treatment options, side effects and duration), prognosis (curability and prolonging life) and all other topics (recovery, self-care and psychosocial functioning). Need for detailed information varied between studies. Patients expressed a higher need for medical than for psychosocial information. Patients preferred to receive information from their doctors the most, followed by nurses. Most studies described patients' satisfaction with the information provided. CONCLUSION: Based on the limited number of data available, medical information is for patients of higher priority compared to psychosocial information. Patients need basic information on diagnosis, treatment, prognosis and all other topics. Need for detailed information varied between studies. Patients were satisfied with the provided information, preferably offered by doctors and nurses. RELEVANCE TO CLINICAL PRACTICE: The perceived need for information and satisfaction with the information provided differs strongly between patients. In clinical practice, more attention is needed for information tailored to the patient, taking into account important moderating factors such as age, type of cancer, time since diagnosis, treatment modality and coping style.

A 'short walk' is longer before radiotherapy than afterwards: a qualitative study questioning the baseline and follow-up design.

BACKGROUND: Numerous studies have indirectly demonstrated changes in the content of respondents' QoL appraisal process over time by revealing response-shift effects. This is the first known study to qualitatively examine the assumption of consistency in the content of the cognitive processes underlying QoL appraisal over time. Specific objectives are to examine whether the content of each distinct cognitive process underlying QoL appraisal is (dis)similar over time and whether patterns of (dis)similarity can be discerned across and within patients and/or items. METHODS: We conducted cognitive think-aloud interviews with 50 cancer patients prior to and following radiotherapy to elicit cognitive processes underlying the assessment of 7 EORTC QLQ-C30 items. Qualitative analysis of patients' responses at baseline and follow-up was independently carried out by 2 researchers by means of an analysis scheme based on the cognitive process models of Tourangeau et al. and Rapkin & Schwartz. RESULTS: The interviews yielded 342 comparisons of baseline and follow-up responses, which were analyzed according to the five cognitive processes underlying QoL appraisal. The content of comprehension/frame of reference changed in 188 comparisons; retrieval/sampling strategy in 246; standards of comparison in 152; judgment/combinatory algorithm in 113; and reporting and response selection in 141 comparisons. Overall, in 322 comparisons of responses (94%) the content of at least one cognitive component changed over time. We could not discern patterns of (dis)similarity since the content of each of the cognitive processes differed across and within patients and/or items. Additionally, differences found in the content of a cognitive process for one item was not found to influence dissimilarity in the content of that same cognitive process for the subsequent item. CONCLUSIONS: The assumption of consistency in the content of the cognitive processes underlying QoL appraisal over time was not found to be in line with the cognitive processes described by the respondents. Additionally, we could not discern patterns of (dis)similarity across and within patients and/or items. In building on cognitive process models and the response shift literature, this study contributes to a better understanding of patient-reported QoL appraisal over time.

Somatically ill persons' self-nominated quality of life domains: review of the literature and guidelines for future studies.

OBJECTIVE: To review which domains somatically ill persons nominate as constituting their QoL. Specific objective is to examine whether the method of enquiry affect these domains. METHODS: We conducted two literature searches in the databases PubMed/Medline, CINAHL and Psychinfo for qualitative studies examining patients' self-defined QoL domains using (1) SEIQoL and (2) study-specific questions. For each database, two researchers independently assessed the eligibility of the retrieved abstracts and three researchers subsequently classified all QoL domains. RESULTS: Thirty-six eligible papers were identified: 27 studies using the SEIQoL, and nine presenting data derived from study-specific questions. The influence of the method of enquiry on patients' self-nominated QoL domains appears limited: most domains were presented in both types of studies, albeit with different frequencies. CONCLUSIONS: This review provides a comprehensive overview of somatically ill persons' self-nominated QoL domains. However, limitations inherent to reviewing qualitative studies (e.g., the varying level of abstraction of patients' self-defined QoL domains), limitations of the included studies and limitations inherent to the review process, hinder cross-study comparisons. Therefore, we provide guidelines to address shortcomings of qualitative reports amenable to improvement and to stimulate further improvement of conducting and reporting qualitative research aimed at exploring respondents' self-nominated QoL domains.

The focus of family members' functioning in the acute phase of traumatic coma: part one: The initial battle and protecting life.

AIMS: The identification and description of the basic psychological process linked with the focus of family members' functioning during the acute phase of traumatic coma. BACKGROUND: Earlier research learned that hope is a core category in coping with traumatic coma. Hope seems to be the drive to keep family members going and to enable them to fulfil their main task namely protecting. In two articles on the focus of family members functioning, this task is defined and the process linked with it is described. DESIGN: A qualitative approach according to the grounded theory method with constant comparison. METHOD: Twenty four in-depth interviews with 22 family members of 16 patients with traumatic coma. RESULTS: Family members describe the period after the confrontation with traumatic coma as a battle. During this battle, they feel the urge to protect their relative in coma, other family members and themselves. They go through three phases: protecting life, protecting from suffering, protecting what remains to rebuild live. In this article (Part One) we describe the initial battle and the phase of protecting life. CONCLUSIONS: All relatives go through the three phases. Family members who have already overcome previous set-backs get through the process slightly more quickly and experience less extreme emotions. RELEVANCE TO CLINICAL PRACTICE: Understanding the process of protecting in different phases may help health care professionals to do anything in their power to avoid unnecessary suffering, to ease the pain and to support family members in their task of protecting.

The focus of family members' functioning in the acute phase of traumatic coma: part two: Protecting from suffering and protecting what remains to rebuild life.

AIMS: The identification and description of the basic psychological process linked with the focus of family members' functioning during the acute phase of traumatic coma. BACKGROUND: Earlier research learned that hope is a core category in coping with traumatic coma. Hope seems to be the drive to keep family members going and to enable them to fulfil their main task, namely protecting. In the two articles on the focus of family members functioning, this task is defined and the process linked with it is described. DESIGN: A qualitative approach according to the 'grounded theory' method. METHOD: Twenty-four in-depth interviews with 22 family members of 16 patients with traumatic coma. RESULTS: Family members describe the period after the confrontation with traumatic coma as a battle. During this battle, they feel the urge to protect their relative in coma, other family members and themselves. They go through three phases: protecting life, protecting from suffering, protecting what remains to rebuild life. In this article (Part Two) we describe the phase of protecting from suffering and protecting what remains to rebuild life. CONCLUSIONS: All relatives go through the three phases. Family members who have already overcome previous set-backs get through the process slightly more quickly and experience less extreme emotions. RELEVANCE TO CLINICAL PRACTICE: Understanding the process of protecting in different phases may help health care professionals to do anything in their power to avoid unnecessary suffering, to ease the pain and to support family members in their task of protecting.

The need for information among patients with hematological malignancies: Psychometric analyses of the 62-item Hematology Information Needs Questionnaire (HINQ-62).

The purpose of this study was to investigate the psychometric characteristics (content validity, internal consistency, and subscale structure) of the Hematology Information Needs Questionnaire-62 (HINQ-62), a patient reported outcome measure (PROM) for assessing the need for information among patients with hematological malignancies (HM-patients). Baseline data were used from a prospective study on the need for information which 336 newly diagnosed HM-patients had completed. In phase 1 (design phase), data from the first 135 patients were used and in phase 2 (validation phase), data from the remaining 201 HM patients were used. Content validity was analyzed by examining irrelevance of items. Items were considered irrelevant if more than 10% of the patients scored totally disagree on that item. The subscale structure of the HINQ-62 was investigated with Factor analysis (FA) (exploratory FA in phase 1 and confirmatory FA in phase 2). Cronbach's α was computed for the different subscales and >.70 was considered as good internal consistency. None of the 62 HINQ-items were irrelevant. Exploratory FA identified five subscales: "Disease, symptoms, treatment and side-effects", "Etiology, sleep and physical changes", "Self-care", "Medical tests and prognosis", and "Psychosocial". Root Mean Square Error of Approximation (RMSEA) among patients was 0.037 in phase 1 and 0.045 in phase 2. The comparative fit index (CFI)/Tucker-Lewis index -non-normed fit index among patients was 0.984/0.983 and 0.948/0.946, in phase 1 and 2 respectively. The internal consistency of the subscales was good, with Cronbach's α 0.82-0.99. The HINQ is a valid PROM for assessing the need for information among Dutch HM-patients at diagnosis.

The process and the meaning of hope for family members of traumatic coma patients in intensive care.

In this study, the authors examined the process that family members go through when they are confronted with traumatic coma. They conducted 24 semistructured interviews with 22 family members of 16 coma patients and analyzed the data using the constant comparative method as proposed by grounded theory. Hope was the most prominent theme. It can be described as keeping a possible positive outcome in mind in an uncertain situation, knowing that this outcome is unlikely to happen. Hope was found to evolve stepwise up and down, dependent on further events and information: big steps at first, smaller later on. Hope helps family members to keep going and to manage care for the patient and for each other. Family members were found to protect themselves against false or unjustified hope by seeking valid information. They alternate their moments of despair, and in their interactions they respect each other's hope.

The effect of an information brochure on patients undergoing gastrointestinal endoscopy: a randomized controlled study.

OBJECTIVE: The aim of the present study was to test the potential beneficial effects of an information brochure on undergoing a gastrointestinal endoscopy for the first time. The information provided was based on self-regulation theory, and patients could restrict themselves to reading the summary only. METHODS: Patients were randomly assigned to an experimental group receiving the brochure at least 1 day before the gastroscopy (N=47), or to a control group not receiving the brochure (N=48). RESULTS: The results show that all experimental subjects, except one, fully read the brochure. Those receiving the brochure experienced less anxiety before the gastroscopy and, afterwards, they reported greater satisfaction with the preparation for it. With regard to coping style there were some small moderating effects into the direction expected: low blunters (those not seeking distraction under impending threat) as compared to high blunters showed extra reduced anxiety after reading the brochure. They also tended to read the brochure more often. High monitors (those seeking information under impending threat) receiving the brochure showed reduced anxiety during the gastroscopy as compared to low monitors (tendency). CONCLUSION: We conclude that providing patients with the developed brochure constitutes an efficient, beneficial intervention. PRACTICE IMPLICATIONS: The brochure could easily be implemented in standard practice without the necessity to take the patient's coping style into account.

Preparing patients for gastrointestinal endoscopy: the influence of information in medical situations.

The effects of the provision of information were tested in a sample of patients who underwent a gastrointestinal endoscopy for the first time (N=260). On the basis of their Threatening Medical Situation Inventory (TMSI)-monitoring score these patients were divided in high monitors versus low monitors. On the basis of the existing literature each group received the type of information that was considered most beneficial with regard to their coping style, and each group was compared with a control group receiving standard care (the usual information plus coaching by a nurse). Dependent variables were anxiety at different points in time, heart rate and skin conductance, pain, experience of the procedure, course of the procedure, duration of gagging, and satisfaction with the information provided. Unexpectedly, it turned out that high monitors did not profit by extensive information when compared with high monitors receiving standard care. Also for low monitors their minimal informational intervention did not exceed the effects of standard care. In the discussion, four factors possibly responsible for these results were elaborated. It is concluded that reservedness is required in providing (too) extensive information to patients who ask for this. Furthermore, considering the rather unpredictable and uncontrollable course of a gastrointestinal endoscopy, coaching by a nurse remains a valuable type of support.

Opening the black box of cancer patients' quality-of-life change assessments: a think-aloud study examining the cognitive processes underlying responses to transition items.

Transition items are a popular approach to determine the clinical significance of patient-reported change. These items assume that patients (1) arrive at a change evaluation by comparing posttest and pretest functioning, and (2) accurately recall their pretest functioning. We conducted cognitive think-aloud interviews with 25 cancer patients prior to and following radiotherapy. Two researchers independently analysed their responses using an analysis scheme based on cognitive process models of Tourangeau et al. and Rapkin and Schwartz. In 112 of the 164 responses to transition items, patients compared current and prior functioning. However, in 104 of these responses, patients did not refer to their functioning at pretest and/or posttest according to transition design's first assumption, but rather used a variety of time frames. Additionally, in 79 responses, the time frame employed and/or description of prior functioning provided differed from those employed in the corresponding pretest items. Transition design's second assumption was therefore not in line with the patients' cognitive processes. Our findings demonstrate that in interpreting transition assessments, one needs to be aware that patients provide change assessments, which are not necessarily based on the cognitive processes intended by researchers and health care providers.

Clarifying quality of life assessment: do theoretical models capture the underlying cognitive processes?

OBJECTIVE: To develop an analysis scheme capturing the cognitive processes underlying QoL assessment to increase our understanding on how to interpret responses to QoL items. Tourangeau et al.'s (The psychology of survey response, 2000) and Rapkin and Schwartz' (Health Qual Life Outcomes 2:14, 2004) cognitive process models form the basis for this analysis scheme. METHODS: We conducted think aloud interviews with six cancer patients prior to and following radiotherapy to elicit the cognitive processes underlying the assessment of 7 EORTC QLQ-C30 items. Content analysis was carried out by two to four researchers independently. Eighty text fragments were analyzed inductively and combined in an iterative process with deductive analyses based on both models. RESULTS: We have developed a comprehensive analysis scheme feasible for analyzing the cognitive processes underlying QoL assessment qualitatively. All cognitive components of both models could be distinguished in our data. The cognitive component 'reporting and response selection' needed extension to fully capture the cognitive processes used. CONCLUSION: The two models combined are useful in describing the cognitive processes cancer patients use in answering QoL items, and as such facilitate insight into patients' self-reported QoL assessments. Interestingly, the content of the cognitive processes not only differed between patients but also between items within patients and over time.

Personality traits and health-related quality of life in patients with mood and anxiety disorders.

BACKGROUND: Health-related quality of life (HRQL) is an accepted outcome measure in patients with mood and anxiety disorders. Yet, surprisingly little attention has been paid to the determinants. In this paper we test the hypothesis that it is associated with personality traits while controlling for mental disorders. METHODS: A large sample of outpatients (n = 640) with mood and anxiety disorders was studied. The empirically supported five factor model of normal personality traits was assessed using the NEO-FFI and includes: neuroticism, extraversion, openness to experience, agreeableness, and conscientiousness. Mental disorders were assessed with the CIDI, and HRQL with the SF-36. RESULTS: Regression analyses revealed that the NEO-FFI scores, with the exception of conscientiousness, were significantly associated with SF-36 subscales and summary scores, independently from the mental disorders. The percentage of explained variance due to the personality traits was highest for the subscales Vitality (10.0%), Mental Health (13.3%) and the Mental Health Summary Score (9.5%). Furthermore, specific personality traits were related to specific SF-36 subscales. CONCLUSIONS: A low HRQL of patients with mood or anxiety disorders is not only determined by the disease or the current health but is also shaped by personality traits that are relatively stable throughout an individual's life time.

How does information influence hope in family members of traumatic coma patients in intensive care unit?

AIMS: To assess the interplay between hope and the information provided by health care professionals. BACKGROUND: Earlier research learned that hope is crucial for relatives of traumatic coma patients. Also it has been reported that the need for information is extremely important for relatives of critically ill patients. DESIGN: A qualitative approach according to the 'grounded theory' method with constant comparison was used. METHOD: We held 24 in-depth interviews with 22 family members of 16 patients with traumatic coma. Data processing and data analysis took place in a cyclic process wherein the induction of themes was alternated by confrontation with new material. RESULTS: Family members of traumatic coma patients want information that is as accurate as possible, provided by doctors and nurses in an understandable manner and leaving room for hope. At first, family members can do no more than passively absorb the information they receive. After some time, they actively start working with information and learn what to build their hope on. In this way, concrete hope evolves and seems to be strongly determined by information. Information that is more positive than warranted is not appreciated at all. It leads to false hope and once its real nature becomes apparent, to increased distress and loss of trust in the professionals. CONCLUSION: The process of hope is crucial in coping with traumatic coma and information can facilitate this process. RELEVANCE TO CLINICAL PRACTICE: If professionals, especially nurses, keep the process in mind that family members go through in handling information, they can not only facilitate this process but also help them to establish realistic hope.

Monitoring and blunting in palliative and curative radiotherapy consultations.

OBJECTIVE: The present research paper investigates how cancer patients' monitoring and blunting coping styles are reflected in their communications during their initial radiotherapy consultations and in their evaluations of the consultation. Additionally, it is explored how a patient's disease status (curative versus palliative) influences the effects of his or her cognitive styles. METHODS: The study included 116 oncology patients receiving treatment from eight radiation oncologists. For 56 patients treatment intent was palliative and for the remaining 60 curative. The patients' communicative behaviors were assessed using the Roter Interaction Analysis System (RIAS). Within three days the patients completed a monitoring and blunting inventory and after another six weeks they evaluated the treatment decision and treatment information by postal questionnaire. RESULTS: Monitoring was positively and blunting negatively related to the patient's expression of questions, emotions and decision-making issues. After six weeks 'high monitors' as opposed to 'low monitors' reported having more doubts about the treatment decision and being less satisfied with the information received while 'high blunters' expressed fewer doubts and more satisfaction than 'low blunters' did. Significant associations were all attributable to the palliative treatment group. CONCLUSION: Cancer patients' communicative behaviors vis-à-vis their oncologist hinge on their cognitive styles and an unfavorable disease status enhances the effects.

Moral dilemmas in neonatology as experienced by health care practitioners: a qualitative approach.

During the last two decades there has been an enormous development in treatment possibilities in the field of neonatology, particularly for (extremely) premature infants. Although there are cross-cultural differences in treatment strategy, an overview of the literature suggests that every country is confronted with moral dilemmas in this area. These concern decisions to initiate or withhold treatment directly at birth and, later on, decisions to withdraw treatment with the possible consequence that the child will die. Given that the neonate cannot express his or her own will, who will decide? And on the basis of what information, values and norms? We explored some of these issues in daily practice by interviewing a small sample of health care practitioners in a Dutch university Neonatal Intensive Care Unit (NICU). It turned out that experiencing moral dilemmas is part of their daily functioning. Nurses underline the suffering of the newborn, whereas physicians stress uncertainty in treatment outcome. To make the best of it, nurses focus on their caring task, whereas physicians hope that future follow-up research will lead to more predictable outcomes. As for their own offspring, part of these professionals would hesitate to bring their own extremely premature newborn to a NICU. For the most oppressing dilemma reported - terminating an already initiated treatment - we propose the concept of 'evidence shift' to clarify the ambiguous position of uncertainty in decision making.