Provision Of Tailored Information Research Articles

Impact of Information Provision on Decision-Making

Purpose: The general purpose of the study was to explore the impact of information provision on decision making.
 Methodology: The study adopted a desktop research methodology. Desk research refers to secondary data or that which can be collected without fieldwork. Desk research is basically involved in collecting data from existing resources hence it is often considered a low cost technique as compared to field research, as the main cost is involved in executive’s time, telephone charges and directories. Thus, the study relied on already published studies, reports and statistics. This secondary data was easily accessed through the online journals and library.
 Findings: The findings reveal that there exists a contextual and methodological gap relating to information provision on decision making. The study offered significant insights into how information provision impacts decision-making across various domains. Through comprehensive review and synthesis of empirical evidence, it emphasized the crucial role of information quality and accessibility in shaping decision outcomes. Tailoring information provision strategies to diverse stakeholders' needs was highlighted, alongside the bidirectional relationship between information processing and decision outcomes. Ethical considerations, such as transparency and privacy, were stressed to ensure equitable decision outcomes. The findings underscored the transformative potential of effective information provision, offering actionable insights for stakeholders. Interdisciplinary collaborations and evidence-based interventions were advocated for driving positive societal change.
 Unique Contribution to Theory, Practice and Policy: The Information Processing theory, Theory of Planned Behaviour and Social Exchange theory may be used to anchor future studies on information provision on decision making. The study offers comprehensive recommendations across theoretical, practical, and policy domains. It calls for further theoretical exploration into cognitive processes underlying decision-making and interdisciplinary collaboration. Practically, it advocates for tailored information provision interventions that match diverse decision contexts and user preferences, alongside transparent and accessible information dissemination practices. Policy-wise, the study urges evidence-based communication strategies, regulatory frameworks promoting transparency and accountability, and educational initiatives fostering information literacy. These recommendations aim to empower individuals, organizations, and policymakers to navigate information landscapes effectively, promote informed decision-making, and address information inequalities.
 Keywords: Information Provision, Decision-Making, Stakeholders, Ethical Considerations

Shared decision-making with older adults with cancer: Adaptation of a model through literature review and expert opinion.

To provide a literature overview of characteristics of Shared Decision Making (SDM) with specific importance to the older adult population with cancer and to tailor an existing model of SDM in patients with cancer to the needs of older adults. A systematic search of several databases was conducted. Eligible studies described factors influencing SDM concerning cancer treatment with adults aged 65years or above, with any type of cancer. We included qualitative or mixed-methods studies. Themes were identified and discussed in an expert panel, including a patient-representative, until consensus was reached on an adjusted model. Overall 29 studies were included and nine themes were identified from the literature. The themes related to the importance of goal setting, need for tailored information provision, the role of significant others, uncertainty of evidence, the importance of time during and outside of consultations, the possible ill-informed preconceptions that health care professionals (HCPs) might have about older adults and the specific competencies they need to engage in the SDM process with older adults. No new themes emerged from discussion with expert panel. This study presents a visual model of SDM with older patients with cancer based on the identified themes. Our model shows key elements that are specific to SDM with older adults. Further research needs to focus on how to educate HCPs on the competencies needed to engage in SDM with older patients, and how to implement the model into everyday practice.

What do we mean by “tailoring” of medical information during clinical interactions?

Although medical information is essential for all patients, information needs and information processing capacities vary between individual patients and over time and context, within patients. Therefore, it is often recommended to “tailor” medical information to individual patients during clinic visits. However, there is a lack of consensus on what “tailoring” in clinical interactions represents since the definitions provided in the literature thus far generally regard tailoring of written text, rather than in dialogue during face-to-face interactions. To provide clinicians with guidance on how to tailor information to individual patients and to allow researchers to assess the effectiveness thereof, clarity is urgently needed regarding what “tailoring” actually means and what it entails in practice.In this paper we outline the current challenges of applying the concept of “tailoring” to the clinical setting and present existing definitions. Importantly, we introduce a new working definition of the concept that encompasses essential informational and dialogic components. We believe this provisional definition promotes much-needed conceptual precision in how communication researchers and educators define and assess tailored information provision in clinical consultations.

Harmful communication behaviors in cancer care: Asystematic review of patients and family caregivers perspectives.

Issues regarding clinician communication remain an important source of complaints within healthcare. This systematic review aims to determine cancer patients' and their family caregivers' views on which clinicians' communication behaviors can harm (i.e. eliciting negative feelings/consequences for patients/family caregivers). We searched for all types of peer-reviewed studies that determined adult (≥18years) cancer patients' and/or family caregivers' perspectives on which clinicians' communication behaviors can harm in several databases (PubMed, Embase, Web of Science, Cochrane Library, Emcare, PsycINFO and Academic Search Premier), supplemented by expert-consultation. Studies were screened using the Artificial intelligence screening tool of ASReview and data was analyzed using Thematic Analysis. To assess the quality of the studies the Qualsyst critical appraisal tool was used. A total of 47 studies were included. Four main themes of harmful communication behaviors were identified: (1) Lack of tailored information provision (e.g. giving too little or too much/specific information) (2) Lack of tailored decision making (ranging from; patient exclusion, to the patients' responsibility, and/or haste) (3) Lack of feeling seen and heard (seen as a disease, not as a human being; not listened to concerns and emotions) (4) Lack of feeling held and remembered (forgotten agreements; lack of care continuity). Our results reveal an overview of patients' and family caregivers' perspectives on which clinicians' communication behaviors can harm. Harm could be prevented when information and decision involvement are tailored and patients' and family caregivers' needs to feel seen, heard, held and remembered are met.

Social Determinants of Health in Maternity Care: A Quality Improvement Project for Food Insecurity Screening and Health Care Provider Referral.

Purpose: This quality improvement project evaluated implementation of social determinants of health screening and referral for food insecurity.Methods: Four obstetric providers used study-developed resources to screen and refer English-speaking patients (n=14) during clinic visits. Providers and patients completed post-visit questionnaires. Provider feedback informed improvements to the intervention approach for consecutive study shifts.Results: Providers and patients reported high satisfaction with encounters. Referrals were made for four patients. Challenges to implementation included resource organization, time constraints, and integration into clinic workflow.Conclusion: Processes for universal screening and tailored information provision are areas to continue to strengthen for establishing equitable health care.

Process evaluation of a tailored intervention to Reduce Inappropriate psychotropic Drug use in nursing home residents with dementia

BackgroundResearch suggests that collaborative and tailored approaches with external expertise are important to process implementations. We therefore performed a process evaluation of an intervention using participatory action research, tailored information provision, and external coaching to reduce inappropriate psychotropic drug use among nursing home residents with dementia. The process evaluation was conducted alongside a randomized controlled trial assessing the utility of this approach.MethodsWe used Leontjevas’ model of process evaluation to guide data collection and analysis, focusing on the relevance and feasibility, extent of performance, and barriers and facilitators to implementation. Data on the relevance and feasibility and on the extent of performance were collected using a questionnaire targeting internal project leaders at nursing homes and our external coaches. Implementation barriers and facilitators were identified by individual semi-structured interviews. The Consolidated Framework for Implementation Research was used to structure and describe the identified barriers and facilitators.ResultsThe intervention was viewed positively, but it was also considered time consuming due to the involvement of many people and designing a tailored action and implementation plan was viewed as complex. The extent of performance differed between nursing homes. Delays in implementation and suboptimal execution of actions may have reduced effectiveness of the RID intervention in some nursing homes. Barriers to implementation were reorganizations, staff turnover, communication issues, unclear expectations, and perceived time pressures. Implementation also depended on the involvement and skills of key stakeholders, and organizations’ readiness to change. Although external coaches stimulated implementation, their additional value was rated variably across organizations.ConclusionsBarriers to implementation occurred on several levels and some barriers appear to be inherent to the nursing home environment and could be points of leverage of future implementation trajectories. This underlines the importance of assessing and supporting organizations in their readiness to change. Sensitivity analyses, taking into account the week in which nursing homes started with implementation and the degree to which actions were implemented as intended, will be appropriate in the effect analyses of the trial.

Patient Perspectives on Novel Treatments in Haemophilia: A Qualitative Study

Background and ObjectiveNew treatments for haemophilia are under development or entering the market, including extended half-life products, designer drugs and gene therapy, thereby increasing treatment options for haemophilia. It is currently unknown how people with haemophilia decide whether to switch to a new treatment. Therefore, the objective of this study was to explore what factors may play a role when Dutch patients and parents of boys with moderate or severe haemophilia make decisions about whether to switch to a different treatment, and how disease and treatment characteristics may affect these decisions. This may aid clinical teams in tailored information provision and shared decision making.MethodsWe conducted interviews among adults with moderately severe or severe haemophilia and parents of young boys with severe haemophilia. We aimed to include participants from a variety of backgrounds in terms of involvement in the haemophilia community, age, treatment centre and treatments. Participants were recruited through the Netherlands Haemophilia Society and a haemophilia treatment centre. Semi-structured interviews were recorded and transcribed verbatim. Thematic content analysis was used to analyse the data.ResultsTwelve people with haemophilia and two mothers of boys with haemophilia were included. In general, participants reported to be satisfied with their current treatment. However, they considered ease of use of the medication (fewer injections, easier handling, alternative administration) an added value of new treatments. Participants were aware of the high cost of coagulation factor products and some expressed their concern about the Netherlands Haemophilia Society’s long-term willingness to pay for current and novel treatments, especially for increased usage due to high-risk activities. Participants also expressed their concerns about the short- and long-term safety of new treatments and believed the effects of gene therapy were not yet fully understood. Participants expected their treatment team to inform them when a particular new treatment would be suitable for them.ConclusionsWith the number of treatment options set to increase, it is important for healthcare providers to be aware of how patient experiences shape patients’ decisions about new therapies.Electronic supplementary materialThe online version of this article (10.1007/s40271-019-00395-6) contains supplementary material, which is available to authorized users.

Informing relatives at risk of inherited cardiac conditions: experiences and attitudes of healthcare professionals and counselees.

Inherited cardiac conditions (ICCs) can lead to sudden cardiac death at young age, even without previous symptoms, yet often remain undetected. To prevent sudden cardiac death, cardiac monitoring and/or predictive DNA testing is advised for at-risk relatives. Probands in whom a causal variant is detected are asked to inform their relatives about the possibility of testing, often supported by a family letter. This qualitative study investigates experiences with and attitudes toward this family-mediated approach in ICCs and explores whether and how improvements can be made. Two online focus groups were conducted with 28 healthcare professionals (HCPs) from various disciplines, as were 25 face-to-face semi-structured interviews with counselees (10 probands; 15 relatives). Data were analysed by two researchers independently using a thematic approach. Participants, both HCPs and counselees, preferred that probands inform relatives about genetic risks in ICCs, but both groups struggled with the dependency on and burden on probands to inform their relatives. To overcome this, HCPs do see a more active role for themselves in informing relatives, but prefer uniformity in procedures in order to maintain their workload. Counselees, on the other hand, prefer a tailored information provision strategy adjusted to family dynamics and the personality characteristics of relatives. In conclusion, although it is generally preferred that probands inform relatives themselves, a more active role of HCPs could be considered to overcome the dependency and burden on probands. Further research is needed to study how HCPs can engage more actively in informing at-risk relatives in current clinical genetic practise.

Developing digital applications for tailored communication in orthopaedics using a Research through Design approach.

ObjectiveTailored communication and information provision is expected to contribute to patient-centred care (PCC) in total hip arthroplasty (THA). In previous research, three subgroups of THA patients were identified that are similar in their clinical, psychological and communication characteristics. Preliminary subgroup-specific design guidelines were also formulated. Using these insights as a starting point, a theoretical framework was developed for tailored information provision and communication using digital applications. This study aims to refine the framework as well as subgroup-specific design guidelines for digital applications.MethodsThis study uses a Research through Design (RtD) approach, generating insights both from the development and evaluation of prototypes in the early design stage. Paper-based prototypes will be made for each subgroup and evaluated with patients and care providers. Semi-structured interviews are held with participants exploring their experiences with the prototype. A quasi-experiment with a non-random control cohort is used to validate the qualitative findings. Post-surgery consultations with and without prototype are videotaped and scored using a structured instrument.ResultsA design diary will be used to summarize design decisions and considerations. Feedback from participants is analysed inductively. Adaptations in subgroup-specific guidelines will be based on comparison of verbal feedback and descriptive statistics from consultations with and without prototype.ConclusionsAlthough mixed-method feasibility studies of digital health interventions are common, this protocol also considers the utility of the early design process and the designer’s perspective for realizing PCC and tailored care.

Much ado about flu: A mixed methods study of parental perceptions, trust and information seeking in a pandemic.

BackgroundEffective public health messaging is essential in both the planning phase and duration of a pandemic.ObjectivesThis study aimed to gain an understanding of parental information seeking, trusted sources and needs in relation to pandemic influenza A 2009 (pH1N1) to inform future policy planning and resource development.Patients/MethodsWe conducted a mixed methods study; parents from 16 childcare centres in Sydney, Australia, were surveyed between 16 November and 9 December 2009, and interviews were conducted with participants from six childcare centres between June 2009 and May 2011.ResultsFrom 972 surveys distributed, 431 were completed; a response rate of 44%. Most parents (90%) reported that doctors were “trusted a lot” as a source of influenza information, followed by nurses (59%), government (56%) and childcare centres (52%). Less trusted sources included media (7% selected “trusted a lot”), antivaccination groups (6%) and celebrities (1%). Parents identified a range of key search terms for influenza infection and vaccine. From 42 in‐depth interviews, key themes were as follows: “Action trigger,” “In an emergency, think Emergency,” “Fright to hype” and “Dr Google and beyond.” Parents relied heavily on media messages, but cynicism emerged when the pandemic was milder than expected. Parents viewed a range of information sources as trustworthy, including doctors, authoritative hospital or government websites, and childcare centres and schools.ConclusionsA user‐centred orientation is vital for pandemic communications including tailored information provision, via trusted sources based on what parents want to know and how they can find it.

Meeting the needs of critical care patients after discharge home: a qualitative exploratory study of patient perspectives.

With improved survival rates in critical care, increasing focus is being placed on survivorship and how best to support patients in returning to their former activity. Little is known about what support patients themselves view as important, and this has implications for the efficacy and acceptability of services provided. To describe former critical care patients' perspectives on the support needed to optimize recovery. This is a qualitative exploratory study of the experiences of support received by critical care survivors. Semi-structured interviews were undertaken with 12 critical care survivors recruited from a charity and a patient and public involvement group. The interviews were analysed using thematic analysis to describe patterns in the participants' experiences. Four themes of support were described: effective management of transfer anxiety, tailored information provision, timely access to services and a supportive social network. Survivors of critical care should be equipped with information about their critical care stay, ongoing health issues and recovery and should be provided with holistic care at home. Critical care follow up was an effective way of meeting many of these needs, but this needs to be flexible to be useful to attendees. Peer support groups (face-to-face and online) provided information, reassurance, a social network and an avenue for those who had longer-lasting problems than current services provide for. Whilst there are commonalities in the problems faced by critical care survivors, recovery is highly individualized, and current support services do not have sufficient flexibility to cater for this. This study shows that many survivors experience after-effects of critical care that outlast the support they are given. These longer-term survivors are often excluded from research studies because of fears of recall bias, resulting in poor understanding of their experiences.

Prostate cancer survivors with a passive role preference in treatment decision-making are less satisfied with information received: Results from the PROFILES registry

ObjectiveTo investigate decision-making role preferences and their association with the evaluation of information received in a sample of low-risk and intermediate-risk prostate cancer (Pca) survivors. MethodsCross-sectional study involved 562 men diagnosed with low-risk or intermediate-risk Pca (median time since diagnosis, 48mo), measuring preferred decision-making role (Control Preference Scale) and the evaluation of information received (EORTC QLQ-INFO25). Analyses were performed using analysis of variance, chi-square tests, and multivariable linear regression models. ResultsMen who preferred a passive role were older and less educated than other preference groups and more often selected a noninvasive treatment option (all with P<0.001). The passive role preference group reported having received less information, judged the received information as less helpful, and indicated lower overall satisfaction with information received (all with P<0.05). Role preference groups did not differ in their desire to receive more information. ConclusionCompared with nonpassive preference groups, the preference for a passive role in Pca treatment decision-making is associated with less satisfaction with the information received. Practice implicationsAssessment of role preferences and tailored information provision could improve satisfaction with information received and perhaps may ultimately lead to improved patient participation in treatment decision-making.

The future of post-reproductive health – The role of the Internet, the Web, information provision and access

The World Wide Web celebrated its 25th birthday in 2014. In those 25 years, the Web has evolved from static websites (Web 1.0) to a highly complex dynamic system (Web 3.0) with health information processing one of the primary uses. Until now, the western biomedical paradigm has been effective in delivering healthcare, but this model is not positioned to tackle the complex challenges facing healthcare today. These challenges have arisen by increasing healthcare demands across the world, exacerbated by an ageing population, increased lifespan and chronic conditions. To meet these needs, a ‘biopsychosocial’ shift from reactive to proactive health is necessary with a patient-centric emphasis (personalised, preventative, participatory and predictive) that includes ‘gender-specific medicine’. The management of the menopause, part of post-reproductive health, requires a life-course approach as it provides a framework for achieving a women’s preferred health outcome. Surveys from www.menopausematters.co.uk have consistently shown that women do not feel informed enough to make decisions regarding Hormone Replacement Therapy and alternative therapies. Health professionals must meet this challenge. The recently published National Institute for Health and Care Excellence guidance on the diagnosis and management of the menopause highlights the need for tailored information provision. The Internet underpinned by the academic disciplines of Health Web Science and Medicine 2.0 has potential to facilitate this shift to biopsychosocial medicine and tailored information within a life-course framework. The concept of Health Web Observatories and their potential benefit to a life-course approach using tools such as www.managemymenopause.co.uk is discussed.

Optimisation of secondary prevention of stroke: a qualitative study of stroke patients’ beliefs, concerns and difficulties with their medicines†

The objectives of this study are to explore stroke patients' and carers' beliefs and concerns about medicines and identify the barriers to medication adherence for secondary stroke prevention. Qualitative semistructured one-on-one interviews were conducted with 30 patients with diagnosis of stroke. Interviews were analysed using the framework approach. The study suggests that stroke patients' and carers' perceptions of their medicines may influence medicine-taking behaviour. In some cases when beliefs outweighed concerns, practical barriers prevented participants taking their medicines. Negative beliefs about a medicine were strong enough to prevent some participants starting a new medicine. Participants' actions were influenced by the perceived consequences of not taking the medicine and the impact of the adverse effect on their quality of life. Concerns lessened with time with no adverse effects. The importance of the role of the carer and of a medicine-taking routine was evident. Participants reported the inadequacy of information provision and the desire to have more written and verbal information. Some reported total lack of contact with their general practitioner or community pharmacist after hospital discharge. Many of the difficulties stroke patients have adhering to secondary prevention strategies are potentially preventable with tailored information provision and appropriate monitoring and follow-up by primary healthcare professionals. We have designed an intervention addressing the identified barriers to medicine taking, the impact of which is currently being measured in a randomised controlled trial of a pharmacist-led home-based clinical medication review in stroke patients.

Development and Formative Evaluation of a Web-Based Self-Management Exercise and Diet Intervention Program With Tailored Motivation and Action Planning for Cancer Survivors

BackgroundMost dietary and exercise interventions developed to date for cancer survivors have employed intensive clinic-based face-to-face counseling sessions. However, when the clinic-based face-to-face intervention ends, the participants cannot receive feedback from the experts, and the motivation for regular exercise and diet practices decreases. One way to overcome the shortcomings of clinic-based face-to-face intervention is to employ the Internet to this end. To maximize effectiveness when providing Web-based interventions, action planning should be able to start at the right time, education should be tailored to motivational readiness, and self-efficacy should be enhanced at appropriate intervals.ObjectiveThe aim of this study was to develop a Web-based self-management diet and exercise intervention program with the aid of the transtheoretical model (TTM) and to conduct formative evaluations.MethodsThe Web-based self-management exercise and diet intervention program was developed employing a 5-phase system development life-cycle (SDLC) method. The 5 phases were 1) identification of user requirements, 2) system design, 3) system development, 4) system evaluation, and 5) system application. An expert group composed of 3 content experts, a Web developer, and 2 Web designers, evaluated the usability and accuracy of the content. The program was evaluated by 30 breast cancer survivors for perceived ease of use.ResultsThe Web-based self-managed exercise and diet intervention program contained 5 components differing in screen layout. These components are introduction, assessment, education (tailored information provision), action planning (goal setting, scheduling, keeping a diary), and automatic feedback. Education, action planning, and automatic feedback were tailored to each participant through the assessment. The processes of change, self-efficacy, and decisional balance, which are the principal strategies encouraging behavioral change according to the TTM theory, were reflected in the education, and self-efficacy was also reflected in the automatic feedback. After iterative testing by experts on problems that arose in terms of usability and content accuracy during system operation, the perceived ease of use of the program was evaluated by 29 breast cancer survivors. The end users rated the program as being easy to understand and use (a total usability score of 81.3 points). In addition, program feasibility was evaluated using the percentage of patients (27/30, 90%) who consistently used the program.ConclusionsThe use of Internet technology allowed immediate and easy access to interventions, real-time monitoring of progress, online education, tailored action planning, and tailored short message services using mobile phones.

An investigation of the effect of tailored information on symptoms of anxiety and depression in Head and Neck cancer patients

To investigate if tailored information provision decreases symptoms of anxiety and depression in late stage Head and Neck (H&N) cancer patients. This non-randomized, controlled trial was conducted with stage III or IV H&N cancer patients. Subjects were recruited at two academic health centers in Montreal. At the test center, subjects received the Multimode Comprehensive Tailored Information Package (MCTIP), while at the control center, they received normal information provision. Participants were evaluated using the Hospital Anxiety and Depression Scale (HADS) at baseline and 3 and 6 month later. Data were analyzed using descriptive statistics then T tests and chi square tests to compare group differences and finally mixed model analysis to test differences in outcome variables. A total of 103 subjects were recruited and of them 96 (47 tests and 49 controls) participants completed baseline, 3 and 6 month evaluations. The test group experienced lower levels of anxiety (p = 0.001) and depression (p = 0.089) than the control group. The subjects receiving tailored information had lower levels of anxiety than their counterparts. In addition, depression showed a reduction in the expected direction in the test group. Our results need to be further confirmed using a randomized approach in different samples but they suggest benefits for stage III and IV H&N cancer patients receiving tailored, multi-modal information concerning their cancer.

It's not just what you say, it's also how you say it: Opening the ‘black box’ of informed consent appointments in randomised controlled trials

Randomised controlled trials (RCTs) represent the gold standard methodology for determining effectiveness of healthcare interventions. Poor recruitment to RCTs can threaten external validity and waste resources. An inherent tension exists between safeguarding informed decision-making by participants and maximising numbers enrolled. This study investigated what occurs during informed consent appointments in an ongoing multi-centre RCT in the UK. Objectives were to investigate: 1] how study staff presented study information to participants; 2] what evidence emerged as to how well-informed participants were when proceeding to randomisation or treatment selection; and 3] what aspects of the communication process may facilitate improvements in providing evidence of informed consent. Qualitative analysis of a purposive sample of 23 recruitment appointments from three study centres and involving several recruitment staff applied techniques of thematic, content and conversation analysis (CA). Thematic analysis and CA revealed variation in appointment content and structure. Appointments were mostly recruiter-led or participant-led, and this structure was associated with what evidence emerged as to how participants understood information provided and whether they were in equipoise. Participant-led appointments provided this evidence more consistently. Detailed CA identified communication techniques which, when employed by recruiters, provided evidence as to how participants understood the choices before them. Strategic use of open questions, pauses and ceding the floor in the interaction facilitated detailed and systematic exploration of each participant's concerns and position regarding equipoise. We conclude that the current focus on content to be provided to achieve informed consent should be broadened to encompass consideration of how information is best conveyed to potential participants. A model of tailored information provision using the communication techniques identified and centred on eliciting and addressing participants' concerns is proposed. Use of these techniques is necessary to make potential participants' understanding of key issues and their position regarding equipoise explicit in order to facilitate truly informed consent.

Barriers perceived to engaging with climate change among the UK public and their policy implications

This paper reports on the barriers that members of the UK public perceive to engaging with climate change. It draws upon three mixed-method studies, with an emphasis on the qualitative data which offer an in-depth insight into how people make sense of climate change. The paper defines engagement as an individual's state, comprising three elements: cognitive, affective and behavioural. A number of common barriers emerge from the three studies, which operate broadly at ‘individual’ and ‘social’ levels. These major constraints to individual engagement with climate change have implications for achieving significant reductions in greenhouse gases in the UK. We argue that targeted and tailored information provision should be supported by wider structural change to enable citizens and communities to reduce their carbon dependency. Policy implications for effective engagement are discussed.

How satisfied are head and neck cancer (HNC) patients with the information they receive pre-treatment? Results from the satisfaction with cancer information profile (SCIP)

Recent UK government recommendations state that high quality information must be provided for cancer patients. The objectives of this study were firstly, to explore how satisfied head and neck cancer (HNC) patients were with information provided about their illness and treatment, in order to identify areas of improvement. Secondly, to assess the extent to which satisfaction with information before treatment was predictive of long-term outcomes. Patients completed the satisfaction with information profile (SCIP), the Hospital Anxiety and Depression Scale (HADS) and the SF-12 Health Survey (SF-12v2) before treatment (n=82), 1 month after the end of treatment (n=68) and 6-8 months later (n=50). Patients were generally satisfied with information, however key areas of improvement were identified, such as the provision of information about support groups, where to go for financial advice and the long-term affects of treatment on ability to work, physical functioning and QoL. Satisfaction with information before treatment was predictive of depression and Mental Component Summary scores (HR-QoL) 6-8 months after the end of treatment. This study highlights the need for tailored information provision and the impact on longitudinal outcomes of satisfying patient's needs for information prior to treatment.