Purpose. To systematically develop and conduct preliminary evaluation of a decision support intervention to engage patients and their families about whether to accept or decline implantable cardioverter-defibrillator (ICD) pulse generator replacement. Methods. A series of studies using multi-methods and guided by the Ottawa Decision Support Framework and the Normalization Process Theory: 1) an integrative review of patients’ perspectives on ICD decision-making; 2) a systematic review of the risks and benefits of ICD replacement; 3) an embedded mixed methods study to iteratively develop a patient decision aid (PDA) and simultaneously plan for its implementation; and 4) a feasibility pilot randomized controlled trial to evaluate ease of recruitment, decision support intervention delivery and data collection. Findings. The integrative review of 25 articles reported that ICD decision-making was difficult and the majority of patients misunderstood ICD therapy. The systematic review of 17 nonrandomized studies reported that complication rates are higher at replacement as compared to initial implant, mortality benefit post ICD replacement is unclear, and patients’ clinical profile can affect ICD’s effectiveness. Findings from both studies were used to draft a PDA. Interviews with 18 end-users (clinicians, patients, spouses) revealed that the current ICD replacement process is automated and needs to elicit patient preferences. The PDA was considered the optimal tool to initiate the discussion of options. In a feasibility trial, 30 patients were randomized to the decision support intervention (PDA + decision coaching) (n=15) or usual care (n=15). The intervention was used as intended, users found the PDA acceptable but acceptability of decision coaching was variable. Patients exposed to the intervention had better knowledge scores compared to controls. Conclusion. The Ottawa Decision Support Framework and Normalization Process Theory were complementary frameworks to ensure that the decision support intervention has the potential for implementation. To determine whether this approach was successful, future research is required to evaluate and implement the intervention in clinical practice. Findings from the feasibility study will be used to design an effectiveness trial.

Purpose: To synthesize evidence on decisional needs assessments and patient decision aid (PtDA) trials based on the Ottawa Decision Support Framework (ODSF) in order to validate the concepts and test the main assertion in the ODSF. Decisional Needs: The systematic review studies (n=45) validated all of the decisional needs identified in the ODSF. Nine new manifestations of ODSF decisional needs emerged (e.g. information overload, unreceptive to information/deliberation, relationship barriers with practitioner). PtDAs: The sub-analysis identified 24 ODSF PtDA trials. Compared to usual care, ODSF PtDAs improved decision quality, addressed decisional needs and reduced decision delay. Further evaluation is needed on downstream impacts of these improvements on decision-making. Conclusions: Using Walker and Avant’s theory testing steps, the integrated findings from the systematic review and sub-analysis validated the ODSF decisional needs concepts and tested the main assertion in the ODSF (that PtDAs address decisional needs and improve decision quality).

Die partizipative Entscheidungsfindung (eng. Shared Decision Making) spielt eine im¬mer größere Rolle im medizinischen Alltag und wird nicht nur von staatlicher Sei¬te, sondern auch von Patienten und Ärzten immer stärker eingefordert. Dieses Modell der partnerschaftlichen Patient-Arzt-Beziehung ist durch einen gemeinsamen Ent¬schei¬dungs¬findungsprozess gekennzeichnet. Es bewirkt, dass Patienten aktiver an Entscheidungen teilnehmen und realistischere Erwartungen an die Behandlung aus diesem Entscheidungsprozess mitnehmen können. Sogar Behandlungs¬ergebnisse werden verbessert und das Gesundheits¬sys¬tem pro¬¬fitiert von einer deutlichen Kostensenkung. Trotzdem wird das Shared Decision Making im Praxisalltag selten strukturiert angewandt und konnte sich in alltäglichen Be¬hand¬lungs¬abläufen noch nicht gänzlich durchsetzen. Studien fanden heraus, dass es einige Fak¬toren gibt, die mit dem Wunsch nach einer partizipativen Therapie¬entscheidung ein¬hergehen. Ziel dieser Arbeit war es herauszufinden, welche Anforderungen die Probanden an den Therapie¬entscheidungsprozess stellen und welche Faktoren den Wunsch nach par¬tizipativer Therapieentscheidung beeinflussen. Diese Ergebnisse sind gleich¬zei¬tig wichtige Informationen für die Patient-Arzt-Beziehung im Praxisalltag, da man ent¬sprechende Konsequenzen für den alltäglichen Behandlungsablauf ableiten kann. Es wurde eine telefonische Befragung in drei deutschen Städten mit insgesamt 466 Pro¬banden erfolgreich durchgeführt. Der Fragebogen umfasste 53 Items, die nach so¬ziodemographischen Informationen, nach gewünschten Charakteristika des Zahn¬arz¬tes sowie der Praxis und der Mundgesundheit der Probanden fragten. Es wurde auch die gewünschte Form der Therapieentscheidung ermittelt, wobei die Pro¬ban¬den angaben, ob der Zahnarzt, der Patient oder beide gemeinsam mit Haupteinfluss einer Partei über die Therapie entscheiden sollten. Die Daten wurden in ACCESS erfasst und mit SPSS ausgewertet. Zur Beurteilung der Signifikanz der Ergebnisse, wurde der Chi-Quadrat-Test angewandt, wobei Er¬geb¬nisse der statistischen Analysen mit einem p-Wert < 0,05 statistisch signifikant sind. 7,2 % der Probanden forderten eine Therapieentscheidung durch den Zahnarzt und 35,4 % eine gemeinsame mit Haupteinfluss durch den Zahnarzt. 17,4 % der Be¬frag¬ten antworteten, dass sie eine Therapieentscheidung durch den Patienten be¬vor¬zu¬gen und 40,0 % stimmten für eine gemeinsame Entscheidung mit Haupteinfluss des Pa¬tienten. Die jüngste Altersgruppe stimmte eher für eine Therapieentscheidung durch den Patienten und die Älteren für eine durch den Zahnarzt oder zumindest mit Haupteinfluss durch den Zahnarzt. Männliche Pro-ban¬den forderten häufiger eine Therapieentscheidung durch den Patienten als Frau¬en. Zahnlose Probanden oder solche mit abnehmbarem Zahnersatz gaben öfter an, ei¬ne Therapie¬entscheidung durch den Zahnarzt zu befürworten als Probanden mit ei¬gener Bezahnung. Probanden, die im Rahmen des OHIP-G5 Beschwerden an¬ga¬ben, forderten stärker eine Therapie¬entscheidung durch den Zahnarzt. Probanden mit einer guten Schulbildung und einer höheren Berufsausbildung bevorzugten eine The¬rapieentscheidung durch den Patienten. Das Vorhandensein eines Haus¬zahn¬arz¬tes ging einher mit einem stärkeren Wunsch nach einer Therapieentscheidung durch den Patienten. Die Probanden, deren letzter Zahnarztbesuch im Median län¬ger zurücklag und diejenigen, die länger an ihren Zahnarzt gebunden waren, be¬vor¬zug¬ten eine Therapieentscheidung durch den Zahnarzt. Der Wunsch nach einem be-stimmten Geschlecht oder Alter des Zahnarztes war unabhängig von der Wahl der Therapieentscheidungsform. Allerdings stimmten die Probanden, die eine län¬gere Berufserfahrung des Zahnarztes forderten, häufiger für eine The¬rapie-ent¬schei¬dung durch den Zahnarzt. Bestimmte Charakteristika des Therapieentscheidungs¬pro¬zesses, wie Aufklärung und Information über Alternativen, Kosten und die ge¬wähl¬te Behandlung, zeigten sich unabhängig von der Forderung nach einer be¬stimm¬ten Form der Therapieentscheidung. Der Wunsch, den Zahnarzt eigenständig aus¬¬zusuchen ging einher mit der Präferenz einer Therapieentscheidung durch den Pa¬¬tienten selbst. Im Vergleich zur Forderung einer bestimmten Form der Therapie¬ent¬scheidung beim Arzt ergab sich eine Tendenz, dass Probanden beim Arzt stärker die Entscheidung durch diesen bevorzugten als beim Zahnarzt. Mehr als 70 % der Probanden wünschten eine gemeinsame Entschei¬dungs-findung, wes¬halb die partizipative Entscheidungsfindung auch in Zukunft gefördert werden sollte. Um die Wünsche des Patienten individuell einschätzen zu können, kann sich der behandelnde Arzt an Parametern wie dem Alter und dem Bildungs¬stand orien¬tie¬ren. Um die Implementierung des Shared Decision Making zu verbessern, sollte wie¬ter¬hin intensive Versorgungsforschung betrieben werden. Auch in der Aus-, Fort- und Wei¬terbildung des Zahnmediziners bedarf es einer nachhaltigen Etablierung dieser The¬ma¬tik. Gleiches gilt für den Berufsalltag, in dem verstärkt auf sogenannte Ent¬schei-dungs¬hilfen Wert gelegt und die Um¬setzung im Nachhinein evaluiert werden sollte.

Shared decision-making (SDM) for contraceptive counseling and method initiation is a hallmark of patient-centered care; SDM is associated with patient satisfaction, method continuation, and the prevention of pregnancy and short inter-pregnancy intervals. To achieve a high-quality experience for women Person-centered approach to counseling is the preferred approach to achieve SDM. Demographic factors and women’s perceptions of their providers have been linked to decision-making. Literature is lacking on SDM practices in safety net clinics, particularly in local health departments. Exploring these constructs is important to inform practices and policies for family planning. This research aimed to examine: 1) the influence of sociodemographic factors on SDM; 2) the influence of SDM on contraceptive method choice; and 3) the effect that women’s perceptions of their providers might have on SDM and associated contraceptive method choice, among non-white women in South Carolina and Alabama. Secondary data were from a longitudinal study that surveyed women of reproductive age (16 to 44 years) from the two states. The data used for this research were collected from non-white women between October 2018 and September 2020 as part of a larger evaluation effort. Bivariate and multinomial analyses were conducted to assess associations and relationships. In Study 1, significant differences in SDM were observed for income and age, with younger women and lower income women having increased odds of engaging in SDM compared to older and higher income counterparts. In Study 2, multinomial analysis indicated that, compared to those who maintained autonomy over their decision, those whose decisions were shared and provider-driven had higher odds of choosing a short-acting method over a less effective method (OR = 1.608 and OR = 2.314, respectively). In Study 3, associations between SDM and women’s perceptions of providers were observed. Compared to those who maintained decision-making autonomy and had positive perceptions of providers, those who engaged in SDM and those whose decisions were least autonomous were more likely to choose a short-acting method over other, less effective contraceptive methods. There is need to further examine whether SDM is underutilized in these settings.

Bakgrund: Personcentrerad vård är en av kärnkompetenserna som krävs för att patienter ska erhålla en så god och säker vård med olika hälso-sjukvårdsprofessioner. Den bygger på ett flertalet begrepp, såsom, livsvärld, partnerskap och delat beslutsfattande.Livsvärlden definieras som den subjektiva världen som människan upplever den. Partnerskapdefinieras som en interpersonell relation där ett gemensamt ansvar och mål återfinns. Delat beslutsfattande definieras som en process där patienter och vårdgivare överväger resultatet av olika tillvägagångssätt, detta bör utgå från patientens personliga preferenser. Syfte: Att beskriva personcentrerad omvårdnad ur ett patientperspektiv. Metod: Systematisk litteraturöversikt Resultat: Livsvärldsperspektivet var något som upplevdes som viktigt i vårdrelationen.Den delade makten är kunskapsutbytet, vilket stärker vårdrelationen och patientens upplevelse av att bli sedd och bekräftad. Att ha tillgång till samma vårdpersonal och kunna delta i omvårdnaden innebar att patienternas autonomi respekterades och ett partnerskap kunde upprättas. Slutsats: Det finns idag kunskapsluckor gällande patienters upplevelser av personcentrerad omvårdnad. Det kan konstateras att patientperspektivet i en framtid kommer att ha en fortsatt avgörande betydelse för relationen mellan patient och sjuksköterska.  Nyckelord: Autonomi, Delat beslutsfattande, Livsvärld, Partnerskap. / Background: Person-centered care is one of the core competencies required for patients to receive as good and safe care with different healthcare professions. It is based on a number of concepts, such as, life world, partnership and shared decision-making. The life world is defined as the subjective world in which a patient experiences it. Partnership is defined as an interpersonal relationship where a shared responsibility and goals are found. Shared decision-making is defined as a process where the patients and caregivers consider the outcome of different approaches, based on the patient’s personal preferences. Aim: To describe person-centered nursing from a patient perspective. Method: Systematic literature review. Results: The life-world perspective was perceived as important in the care relationship. The shared power is the exchange of knowledge, which strengthens patient’s experience of being seen and confirmed. Having access to the same healthcare staff and being able to participate in nursing meant that patient’s autonomy was respected and a partnership could establish. Conclusion: Today there are knowledge gaps regarding patient’s experiences of person-centered care. The patient perspective in the future will be of decisive importance for the relationship between the patient and the nurse.  Keywords: Autonomy, Lifeworld, Partnership, Shared decision-making.

BACKGROUND: Medical professional organizations in the U.S. recommend shared decision-making for routine labor induction in healthy term pregnancies. Shared decision-making is part of high quality, person-centered care and has substantial positive impacts. Despite these recommendations for, and impacts of, shared decision-making many people, especially people of color and those who are Medicaid-insured, do not experience shared decision-making concerning induction and according to a 2020 scoping review there are no patient decision aids on this topic. METHODS: We used quality improvement and qualitative methods to develop, test, and refine a patient decision aid on labor induction in healthy pregnancies at or beyond 39 weeks to support shared decision-making. We assessed shared decision-making primarily with these outcomes: patients’ understanding of choices, pros and cons of choices, and their role as primary decision-maker. A quality improvement team developed an initial prototype and used Plan-Do-Study-Act cycles to get patient and provider feedback. The decision aid was tested in three languages by providers across obstetrics, family medicine, and midwifery at a tertiary hospital and two community health centers in Boston, MA between September 2020 and December 2021. RESULTS: Shared decision-making on labor induction in healthy pregnancies was achieved. Across three Plan-Do-Study-Act cycles 24 pregnant people were interviewed. Most were people of color and Medicaid-insured. Many were recent immigrants and/or non-Native English speakers. Nearly all interviewees experienced shared decision making: 23/24 understood their role as the decision-maker. The majority could name two or three choices they had and pros and cons of different choices. Many described the process as empowering and positive. Nine medical providers tested the decision aid and gave feedback. Providers said using the tool helped improve the consistency and content of their counseling and reduce the role of bias. CONCLUSION: A balanced, evidence-based decision aid can support patients and providers in achieving shared decision-making on induction. Quality improvement and qualitative methods were shown effective for decision aid development and can be applied to other topics within and beyond maternity care. Decision aids may be a meaningful part of efforts to improve equity when development, testing, and evaluation centers people with marginalized identities.

Shared decision making (SDM) is a paradigm of patient-physician communication which aims at combining the physician s expertise and the patient s individual preferences regarding a treatment decision. Although most clinicians consider SDM the most appropriate communication style, neither a precise theoretical framework nor a convincing evaluation method has been proposed yet. Since SDM is especially indicated in situations without any clearly superior treatment alternative which is often due to the lack of reliable clinical evidence several different qualities of uncertainty have to be faced and negotiated to reach a consensual decision. These include medical considerations like valuing risks and harms of each treatment as well as questions e.g. about sense of life in view of limited lifetime or reliability of the partnership under life threatening conditions. Based on qualitative interviews with cancer patients using the Grounded Theory approach, a questionnaire has been derived addressing multiple qualities of uncertainty. The QUiCC (Qualities of Uncertainty in Chronic Conditions) has been validated in a multicenter study using multidimensional Rasch models and classical item analysis procedures providing strong evidence for its reliability and validity. Open negotiation of uncertainties will probably not result in their reduction. Even so, we feel that patients would benefit from negotiating various uncertainties with their physician. Transition of uncertainty to another state rather than its replacement with an illusive certainty can nevertheless empower the patient in his or her decision-making process.

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京都大学 / 新制・課程博士 / 博士(社会健康医学) / 甲第24290号 / 社医博第126号 / 新制||社医||12(附属図書館) / 京都大学大学院医学研究科社会健康医学系専攻 / (主査)教授 今中 雄一, 教授 西浦 博, 教授 寺田 智祐 / 学位規則第4条第1項該当 / Doctor of Public Health / Kyoto University / DFAM