Design and development of a new pictorial tool to facilitate communication around advance care planning.

BACKGROUND: Advance care planning (ACP) aims to ensure that people with chronic or advanced disease receive medical care that is consistent with their values and preferences. However, professionals may find it challenging to engage these patients in conversations about the end of life. We sought to develop a pictorial tool to facilitate communication around ACP. METHODS: This was a three-phase study. In phase 1, we used the nominal group and Delphi techniques to achieve expert consensus regarding the conceptual content of the tool. In phase 2, a professional cartoonist was commissioned to create a series of cartoons representing each of the content areas resulting from the Delphi process. The pictorial tool was then administered (phase 3) with a sample of individuals with advanced/chronic disease to explore whether the cartoons were easy to understand and conveyed the intended message. RESULTS: Following a three-round Delphi process, consensus was reached regarding a set of 12 key content areas that should be considered in the context of an ACP interview. The cartoons created to represent each of the 12 areas were then reviewed and ordered so as to reflect the typical stages of an end-of-life care interview. After administering the pictorial tool with 24 frail older adults with advanced/chronic disease, changes were made to 9 of the 12 cartoons. CONCLUSIONS: The new pictorial tool comprises a set of 12 cartoons that can guide professionals as they seek to engage frail older adults with advanced/chronic disease in conversations about the end of life and ACP.

The Wish to Hasten Death in Patients With Life-Limiting Conditions. A Systematic Overview.

CONTEXT: A systematic review of the wish to hasten death among people with life-limiting conditions was published in 2011. Since then, other reviews and primary studies have been published that have added to knowledge regarding the conceptual definition, aetiology and assessment of the wish to hasten death. OBJECTIVES: To provide an updated synthesis of the literature on the wish to hasten death in people with life-limiting conditions. METHODS: An overview of systematic reviews and primary studies was conducted, using an integrative review method. PubMed, CINAHL, Scopus and Web of Science databases were searched, from their inception until 2023. We included all systematic reviews published to date and all primary studies not included in these systematic reviews. RESULTS: Eleven systematic reviews and 35 primary studies were included. We propose that the phenomenon may usefully be considered as existing along a continuum, defined by the extent to which thoughts of dying are linked to action. A total of nine assessment tools have been described. The reported prevalence of the wish to hasten death appears to be influenced by the wording used in assessment instruments, as well as by the cut-off used when applying a particular tool. Depression, pain, functional disability, decreased sense of meaning in life, the sense of being a burden and reduced quality of life are the most widely reported related factors. CONCLUSION: This overview underscores the need for clinical strategies that can identify different manifestations of the wish to hasten death among people with life-limiting conditions.

Definition and validation of the nursing diagnosis label "wish to die": a research protocol.

BACKGROUND: Euthanasia has been incorporated into the health services of seven countries. The legalisation of these practices has important repercussions for the competences of nurses, and it raises questions about their role. When a patient with advanced disease expresses a wish to die, what is expected of nurses? What are the needs of these patients, and what kind of care plan do they require? What level of autonomy might nurses have when caring for these patients? The degree of autonomy that nurses might or should have when it comes to addressing such a wish and caring for these patients has yet to be defined. Recognising the wish to die as a nursing diagnosis would be an important step towards ensuring that these patients receive adequate nursing care. This study-protocol aims to define and validate the nursing diagnosis wish to die in patients with advanced disease, establishing its defining characteristics and related factors; to define nursing-specific interventions for this new diagnosis. METHODS: A prospective three-phase study will be carried out. Phase-A) Foundational knowledge: an umbrella review of systematic reviews will be conducted; Phase-B) Definition and validation of the diagnostic nomenclature, defining characteristics and related factors by means of an expert panel, a Delphi study and application of Fehring's diagnostic content validation model; Phase-C) Definition of nursing-specific interventions for the new diagnosis. At least 200 academic and clinical nurses with expertise in the field of palliative care or primary health care will be recruited as participants across the three phases. DISCUSSION: The definition of the wish to die as a nursing diagnosis would promote greater recognition and autonomy for nurses in the care of patients who express such a wish, providing an opportunity to alleviate underlying suffering through nursing-specific interventions and drawing attention to the needs of patients with advanced disease. The new diagnosis would be an addition to nursing science and would provide a framework for providing care to people with advanced disease who express such a wish. Nurses would gain professional autonomy about identifying, exploring and responding clinically to such a wish.

What makes the palliative care initial encounter meaningful? A descriptive study with patients with cancer, family carers and palliative care professionals.

BACKGROUND: The palliative care initial encounter can have a positive impact on the quality of life of patients and family carers if it proves to be a meaningful experience. A better understanding of what makes the encounter meaningful would reinforce the provision of person-centred, quality palliative care. AIM: To explore the expectations that patients with cancer, family carers and palliative care professionals have of this initial encounter. DESIGN: Qualitative descriptive study with content analysis of transcripts from 60 semi-structured interviews. SETTING/PARTICIPANTS: Twenty patients with cancer, 20 family carers and 20 palliative care professionals from 10 institutions across Spain. RESULTS: Four themes were developed from the analysis of interviews: (1) the initial encounter as an opportunity to understand what palliative care entails; (2) individualised care; (3) professional commitment to the patient and family carers: present and future; and (4) acknowledgement. CONCLUSION: The initial encounter becomes meaningful when it facilitates a shared understanding of what palliative care entails and acknowledgement of the needs and/or roles of patients with cancer, family carers and professionals. Further studies are required to explore how a perception of acknowledgement may best be fostered in the initial encounter.

Development of a Guide to Multidimensional Needs Assessment in the Palliative Care Initial Encounter (MAP).

CONTEXT: Ensuring patient-centered palliative care requires a comprehensive assessment of needs beginning in the initial encounter. However, there is no generally accepted guide for carrying out this multidimensional needs assessment as a first step in palliative intervention. OBJECTIVES: To develop an expert panel-endorsed interview guide that would enable proactive and systematic Multidimensional needs Assessment in the Palliative care initial encounter (MAP). METHODS: A preliminary version of the MAP guide was drafted based on a published literature review, published semistructured interviews with 20 patients, 20 family carers, and 20 palliative care professionals, and a nominal group process with palliative care professionals and a representative of the national patient's association. Consensus regarding its content was obtained through a modified Delphi process involving a panel of palliative care physicians from across Spain. RESULTS: The published systematic literature review and qualitative study resulted in the identification of 55 needs, which were sorted and grouped by the nominal group. Following the Delphi process, the list of needs was reduced to 47, linked to six domains: Clinical history and medical conditions (n = 8), Physical symptoms (n = 17), Functional and cognitive status (n = 4), Psycho-emotional symptoms (n = 5), Social issues (n = 8), and Spiritual and existential concerns (n = 5). CONCLUSION: MAP is an expert panel-endorsed semi-structured clinical interview guide for the comprehensive, systematic, and proactive initial assessment to efficiently assess multiple domains while adjusting to the needs of each patient. A future study will assess the feasibility of using the MAP guide within the timeframe of the palliative care initial encounter.

Experiences of Isolation among Patients Hospitalized during an Infectious Disease Outbreak: A Systematic Review and Meta-Ethnography.

Hospital isolation is common for people during infectious disease outbreaks. Anxiety, stress, depression and other psychosocial outcomes have been reported due to these measures. However, there is scarce evidence about the experience of being isolated and about best practices for empathic clinical care in these circumstances. The aim of this study was to explore the experience of isolation on patients hospitalized during an infectious disease outbreak. A systematic review and meta-ethnography was carried out. A search strategy was applied to the PubMed, CINAHL, Web of Science, and PsycINFO databases on April 14, 2021 and again May 2, 2022. Data synthesis was conducted using Noblit and Hare's method of qualitative thematic synthesis. Twenty reports were included in this review: 16 qualitative, two mixed-methods (only the qualitative part was analyzed), plus 2 personal view pieces. They described the experiences of a total of 337 people hospitalized and isolated with an infectious disease. Following analysis and coding of data, four themes emerged: 1) Feelings triggered by isolation; 2) Coping strategies; 3) Connection/disconnection; 4) Factors that influence the experience of isolation. Despite a sensitive search strategy, limited studies represent patient experiences using qualitative methods. The experience of isolation among patients hospitalized during an outbreak is characterized by fear, perceived stigma, and a sense of disconnection from others and the outside world due to a lack of information. Fostering a person-centered care model could help hospitalized patients develop adaptive mechanisms that minimize the impact of isolation.

The past and future of uncertainty in advanced illness: a systematic scoping review of underlying cognitive processes.

BACKGROUND: To explain what cognitive capacity shapes uncertainty in advanced illness by identifying the types of evidence, mapping underlying cognitive processes to uncertainty, and outlining future directions for research and interventions. DESIGN: A systematic scoping review of mixed study designs was carried out following the methodological framework of Arksey and O'Malley (2005) and using qualitative content analysis. METHODS: PubMed, CINAHL, Embase, and PsycINFO were searched for original studies published in full and in English through December 2021 that reported on uncertainty in illness and related cognitions, cognitive science, or cognitive functions. RESULTS: After screening 978, 18 articles met the inclusion criteria for review. We found the cognitive capacity of mental time travel - to relive the past or foresee life in the future - interacted with episodic memory retrieval to inform decision-making, and prospection to imagine, predict or prepare for future outcomes to determine lesser or greater uncertainty in advanced illness. CONCLUSIONS: Mental time travel is a fundamental cognitive function when the future is limited by an advanced illness, to review life as a meaningful narrative. The role of mental time travel to construct or make sense of uncertain futures inherent in advanced illness can inform theory and targets for intervention.

Attachment-Based Compassion Therapy for Reducing Anxiety and Depression in Fibromyalgia.

Fibromyalgia patients often experience anxiety and depressive symptoms; however, validated interventions show only limited efficacy. This pilot study analyzed the effects of a 16-session version of attachment-based compassion therapy (ABCT-16) for improving anxiety and depressive symptomatology, as well as self-compassion and decentering, in 11 fibromyalgia patients. Scales were assessed at four time points: baseline, after sessions 8 and 16, and 3.5 months after the completion of the program. Significant improvements were found in all outcomes after the program, and most remained significant in the follow-up assessment. Our preliminary results suggest that ABCT-16 can be effective for improving anxiety and depressive symptomatology in fibromyalgia patients. Nonetheless, further studies with larger samples and control groups are necessary to confirm these results.

Control in patients with advanced cancer: an interpretative phenomenological study.

BACKGROUND: In the context of life-threatening illness, loss of control is argued as a source of suffering and loss of perceived dignity, whereas having control over the dying process has been seen as a way of maintaining personal independence. Little is known about the meaning of control from the patients' perspectives. Thus, the aim of this study was to explore how patients with advanced cancer understand control, in terms of underlying beliefs, attitudes, and expectations consistent with self-efficacy, in different dimensions of their life, their illness, and their healthcare. METHODS: We conducted semi-structured qualitative interviews using an interpretive phenomenological analysis approach. Patients with advanced cancer from an oncology unit and a palliative care unit from Barcelona (Spain) were recruited. The inclusion criteria were a) ≥ 18 years old; b) fluency in Spanish or Catalan; c) outpatients diagnosed with advanced cancer; d) Eastern Cooperative Oncology Group (ECOG) between 0 and 3; e) judged by their physician or nurse to be emotionally stable; f) considered to have control over their illness and circumstances according to their responsible physician; and g) signed informed consent. RESULTS: We interviewed eight participants (ages ranged from 29 to 70 years, six were female). Two themes were identified: 1) factors that influence the perception of control, with subthemes: uncertainty about future suffering, character traits underlying a need for control; sense of lack of care as a source of loss of control; and 2) perceiving control over an uncontrollable illness, explained by perceived control over subjective wellbeing and adjusting the focus of control. The data allowed us to identify strategies that promote a sense of control in these patients. CONCLUSIONS: The illness, according to the participants, was experienced as series of losses. However, attention was often focused on areas where they continued to have control. These findings selectively reflect experiences of those who see themselves able to effect outcomes in life, suggesting future research should address how both family members and healthcare professionals can help to empower all patients.

Thinking clearly about dignity: relationships between cognitive processes underlying perceived dignity as determinants of psychological adjustment.

BACKGROUND: Public and professional views strongly equate dignity among the dying with their abilities to make decisions about medical and personal treatment and care. To make these decisions requires cognitive processes that inform our understanding of circumstances by integrating thoughts, experiences, and perceptions with prior knowledge. But patients with terminal illnesses, especially cancer, often experience problems stemming from cognitive changes and the cognitive state of uncertainty that can interfere with knowing what options for care are essential to targeting their sense of dignity. This paper aims to propose and test a model that defines targets for dignity-conserving care from underlying cognitive changes as antecedents to uncertainty that impact psychological adjustment of patients with advanced cancer. PARTICIPANTS AND PROCEDURE: This is a cross-sectional observational study using participant data from 257 patients with advanced cancer. The Patient Dignity Inventory and the Hospital Anxiety and Depression Scale were administered to patients and analyzed according to model hypotheses. RESULTS: Analyses used structural equational modeling to confirm model pathways. In the context of perceived dignity in advanced cancer, there was a direct pathway from patient reported problems with cognitive changes to uncertainty, that in turn had both direct and indirect effects on depression. CONCLUSIONS: The results suggest that cognitive changes challenge perceptions of dignity and can independently be targeted as modifiable processes to provide dignity-conserving care.

What defines the comprehensive assessment of needs in palliative care? An integrative systematic review.

BACKGROUND: The comprehensive assessment of needs in palliative care identifies where patients most want attention to guide clinical decisions that tailor care provision from their first encounters. AIM: To define how and what needs are identified by the comprehensive assessment of needs in the original peer-reviewed articles in the field of palliative care. DESIGN: An integrative systematic review as outlined by Whittemore and Knafl. Quality appraisal performed using the Mixed Methods Appraisal Tool. DATA SOURCES: PubMed, CINAHL, PsycINFO, Web of Science databases searched through May 2019 and updated in July 2020. RESULTS: Forty-nine articles met inclusion criteria for original articles in English or Spanish reporting comprehensive assessment of needs of adult patients receiving palliative care. The majority (41/49) of studies were moderate to high quality. Two themes were identified: (1) How a comprehensive assessment of needs should be carried out in palliative care, which reflected a preference to develop structured tools for assessment; (2) What needs of patients should be assessed in the comprehensive assessment of needs in palliative care, which conveyed a trend to assess beyond core domains - physical, psychological, social, spiritual - with information and practical most prevalent, but with substantial variation in specifying and classifying needs into domains. CONCLUSIONS: The assessment of needs in palliative care is comprehensive but lacks consensus on the needs and domains that should be assessed by the palliative care team. Future studies should better define what needs can be standardized into the assessment to improve process of care and patient satisfaction.

Quality of life in Cushing's syndrome.

Measurement of Health-Related Quality of Life (HRQoL) is emerging as an important clinical endpoint which complements diagnostic workup and contributes to place patients at the centre of the decision-making process through the recognition of their needs, concerns, goals and expectations. Chronic excessive cortisol exposure in Cushing's syndrome (CS) causes severe physical and psychological morbidity which invariably affects HRQoL during the active phase of the disease and even after successful treatment. This sustained deterioration of patient's wellbeing is partly related to the persistence of several features associated with prior cortisol excess, including affective disorders, cognitive dysfunctions and negative illness perception. The aim of this review is to summarize the most recent evidence on HRQoL in CS, including the main determinants of its impairment and the results of some educational programs specifically addressed to improve patient's coping abilities. The preliminary results of an unpublished survey on patient's unmet needs will also be presented.

Screening for the Desire to Die in the First Palliative Care Encounter: A Proof-of-Concept Study.

Context: There is a lack of consensus about the appropriate moment to assess a potential wish to hasten death (WTHD) in patients with life-threatening illness, despite evidence of its positive appraisal among patients. Objectives: To evaluate the practical potential and acceptability of questions about the WTHD in the first palliative care (PC) clinical encounter. Design: A proof-of-concept single-arm unmasked trial. Subjects: We enrolled 30 advanced cancer patients, 16 inpatients and 14 outpatients in their first PC clinical encounter. Measurements: We assessed the WTHD using a semistructured interview guide, the Assessment of the Frequency and Extent of the Desire to Die (AFEDD) embedded in a multidimensional needs assessment carried out during the first PC encounter. Information about practical potential [patients consider the assessment (a) important and (b) helpful] and acceptability [patients (a) understand and (b) are not bothered by the questions] was obtained. Results: Thirty-two patients were approached and 30 (94%) agreed to participate. The WTHD was present in two outpatients and eight inpatients. The question to assess WTHD were well understood by 94% of patients and was considered not bothersome by 87% and quite or very helpful by 80%, regardless of whether they had WTHD. Conclusions: The results support that clinicians can integrate screening for the WTHD in usual clinical practice within a multidimensional needs assessment. Patient acceptability suggests that this as a part of patient-centered care including in the first PC clinical encounter. Further studies are needed to confirm efficacy and safety in larger and different populations.

Older Age: A Protective Factor Against Perceived Dignity-Related Distress in Patients With Advanced Cancer?

CONTEXT: Most older adults will face threats to loss of health and social support, which can affect their perceived dignity. Although problems with perceived dignity increase in the context of cancer, the specific experience for those older compared with younger patients with advanced cancer has not been described despite its contributions to the wish to hasten death (WTHD). OBJECTIVES: To understand the influence of age group to the perception of dignity, considering changes in quality of life and the WTHD in patients with advanced cancer. METHODS: The Patient Dignity Inventory was administered to 194 patients with advanced cancer. The data were analyzed by separating the sample into age groups younger than 65 years (N = 106) or 65 years and older (N = 88). Linear regression models were adjusted with the explanatory variables of WTHD, quality of life, as well as functional status, physical dependence, depression, anxiety, and sociodemographic variables. RESULTS: Older patients showed a 2.6% decrease in the total scores of perceived dignity-related distress compared to younger patients. CONCLUSION: Older age could be a protective factor against the perception of loss of dignity in patients with advanced cancer, a more positive perspective of the aging experience.

Recognition of cognitive complaints for patients with advanced cancer.

Fueled by increasing recognition that cancer-related cognitive impairment impacts quality of life among cancer survivors, we suggest that researchers and clinicians expand their focus to acknowledge the impact of cognitive changes for those with advanced cancer. We outline five reasons that patients with advanced cancer would benefit from comprehensive assessments that include questions about cognitive complaints. Advanced cancer has all the characteristics that would lead to cognitive changes. Patients with advanced cancer may have a higher risk for cognitive impairment due to aggressive chemotherapies, higher symptom burden, and greater psychosocial distress. This commentary contextualizes how cognitive complaints may relate to multiple factors relevant to the advanced cancer patient. By simply asking the patient about their perceived cognitive changes, we argue this may be a stepping stone to finding non-pharmacological ways to address cognitive impairment.

Health-related quality of life in patients with advanced cancer who express a wish to hasten death: A comparative study.

BACKGROUND: Some evidence suggests the wish to hasten death is related to poor health-related quality of life. Deficits in perceived dignity and self-efficacy are risk factors for wish to hasten death that also impact health-related quality of life. AIM: To compare perceived health-related quality of life, dignity and self-efficacy in patients with advanced cancer who either do (case group) or do not (control group) express a wish to hasten death. Cases and controls were matched on sociodemographic and functional characteristics. DESIGN: A comparative cross-sectional study. PARTICIPANTS: A total of 153 adult patients with advanced cancer were assessed for wish to hasten death using the Desire for Death Rating Scale. Scores ⩾1 indicate some degree of wish to hasten death (case group, n = 51), and score = 0 implies no wish to hasten death (control group, n = 102). Assessments included health-related quality of life using the European Organization for Research and Treatment of Cancer Quality-of-Life Core 15-Item Palliative Questionnaire, perceived loss of dignity using the Patient Dignity Inventory and self-efficacy using the General Self-Efficacy Scale. RESULTS: Patients with a wish to hasten death had worse emotional functioning (p < 0.001), greater perceived loss of dignity (p < 0.001) and lower self-efficacy (p = 0.001). There was no difference in most physical symptoms. Perceived overall health-related quality of life was significantly worse for those with a clinically relevant wish to hasten death (p = 0.023) and marginally worse for the case group than the control group (p = 0.052). CONCLUSION: Patients with wish to hasten death showed lower perceived dignity, self-efficacy and emotional quality of life than patients without wish to hasten death without necessarily perceiving worse physical symptoms.

Proactive and systematic multidimensional needs assessment in patients with advanced cancer approaching palliative care: a study protocol.

INTRODUCTION: The benefits of palliative care rely on how healthcare professionals assess patients' needs in the initial encounter/s; crucial to the design of a personalised therapeutic plan. However, there is currently no evidence-based guideline to perform this needs assessment. We aim to design and evaluate a proactive and systematic method for the needs assessment using quality guidelines for developing complex interventions. This will involve patients, their relatives and healthcare professionals in all phases of the study and its communication to offer clinical practice a reliable approach to address the palliative needs of patients. METHODS AND ANALYSIS: To design and assess the feasibility of an evidence-based, proactive and systematic Multidimensional needs Assessment in Palliative care (MAP) as a semistructured clinical interview guide for initial palliative care encounter/s in patients with advanced cancer. This is a two-phase multisite project conducted over 36 months between May 2019 and May 2022. Phase I includes a systematic review, discussions with stakeholders and Delphi consensus. The evidence gathered from phase I will be the basis for the initial versions of the MAP, then submitted to Delphi consensus to develop a preliminary guide of the MAP for the training of clinicians in the feasibility phase. Phase II is a mixed-methods multicenter feasibility study that will assess the MAP's acceptability, participation, practicality, adaptation and implementation. A nested qualitative study will purposively sample a subset of participants to add preliminary clues about the benefits and barriers of the MAP. The evidence gathered from phase II will build a MAP user guide and educational programme for use in clinical practice. ETHICS AND DISSEMINATION: Ethical approval for this study has been granted by the university research ethics committee where the study will be carried out (approval reference MED-2018-10). Dissemination will be informed by the results obtained and communication will occur throughout.

Feeling like a burden to others and the wish to hasten death in patients with advanced illness: A systematic review.

Studies that have explored the wish to hasten death (WTHD) in patients with advanced illness have found that the feeling of being a burden may trigger WTHD. Research suggests that both the feeling and the wish are indicators of multidimensional suffering whose meaning may depend on the patient's biographical background. Therefore, we carried out a systematic review and meta-ethnography. Fourteen qualitative studies, reported in 16 articles, met the inclusion criteria. The analysis identified two themes: the personal and social dimensions that could help to explain the feeling of being a burden in these patients. These dimensions reveal how this feeling is linked to physical, psychological/emotional, existential and social factors. The feeling of being a burden cannot be understood without considering patients' personal interpretation of their dependency or care needs, and hence it is also necessary to understand their biographical background. Such an understanding is crucial to inform clinical policies based on the moral duty to provide all patients with humane care.

The clinical evaluation of the wish to hasten death is not upsetting for advanced cancer patients: A cross-sectional study.

BACKGROUND: An important concern of healthcare professionals when exploring the wish to hasten death with patients is the risk of causing them some type of distress. AIM: To assess the opinion of hospitalized patients with advanced cancer about the proactive assessment of the wish to hasten death. DESIGN: Descriptive, cross-sectional study. SETTING/PARTICIPANTS: We assessed 193 advanced cancer patients admitted to an oncology ward for the wish to hasten death using a semi-structured clinical interview. After the assessment the participants were surveyed to determine whether they found the interview upsetting and, if so to what extent, and also their opinion regarding the assessment's importance. RESULTS: The wish to hasten death was reported by 46 (23.8%) patients. The majority of patients (94.8%) did not find talking about the wish to hasten death to be upsetting, regardless of whether they presented it or not. The majority of patients (79.3%) considered that it was either quite or extremely important for the clinician to proactively assess the wish to hasten death and discuss this topic, regardless of whether they experienced it. CONCLUSIONS: In this study, most of the advanced cancer patients did not find the assessment of wish to hasten death to be upsetting, and a substantial proportion of patients in this study believe that it is important to routinely evaluate it in this setting. These findings suggest that healthcare professionals can explore the wish to hasten death proactively in routine clinical practice without fear of upsetting patients.

Circulating miR-103a-3p and miR-660-5p are associated with bone parameters in patients with controlled acromegaly.

Background Biochemical control of GH/IGF-I excess in acromegaly (ACRO) is associated with persistent impairment of trabecular microstructure leading to increased risk of vertebral fractures. Circulating miRNAs modulate the activity of osteoblasts and osteoclasts, and may be potential biomarkers of osteoporosis. Aims Identify differentially expressed miRNAs in the serum of patients with controlled ACRO vs controls and correlate miRNA levels with both biochemical and structural bone parameters. Patients and methods Twenty-seven patients with controlled ACRO (11 males, 16 females; mean age, 48 ± 5 years; BMI, 28 ± 4 kg/m2) and 27 age-, gender- and BMI-matched controls were recruited. Areal BMD at lumbar spine and femur, and trabecular bone score were assessed; volumetric BMD was measured by quantitative computed tomography QCT-Pro (Mindways). Twenty miRNAs, chosen by their putative role in bone, were quantified in serum using real-time qPCR. Results In ACRO patients, miR-103a-3p and miR-191-5p were found overexpressed, whereas miR-660-5p was underexpressed (P < 0.001). miR-103a-3p levels were negatively associated with both trabecular vBMD at trochanter and serum osteoprotegerin concentrations (P < 0.05) and positively with vitamin D concentrations (P < 0.01) and total cross-sectional area of the femoral neck (P < 0.05). miR-660-5p levels were correlated with both trabecular vBMD at trochanter and OPG concentrations (P < 0.05), but were negatively associated with vitamin D levels (P < 0.05). A negative correlation between miR-103-a-3p and miR-660-5p was found in both groups (P < 0.001). Conclusions Circulating miR-103a-3p and miR-660-5p are differentially expressed in controlled ACRO patients and associated with bone structural parameters. miRNAs may be one of the mechanisms involved in the pathogenesis of bone disease and could be used as biomarkers in ACRO patients.